Hi,

I'm brand-new to this site and have a general question about immunologists, but first, a little background:

I suffer from three (so far...) autoimmune disorders: Hashimotos' thyroiditis w/ hypothyroidism, myasthenia gravis, and vitiligo. These have all been dx'ed in the last 10 months, despite my having been fairly sick for at least 10 years.

I am seeing a neuromuscular specialist for the MG and an endocrinologist for the thyroid disorder. I also have fibromyalgia, but I have not been to a rheumatologist in a couple of years because mine stopped participating in my insurance plan.

In seeing the two specialists for the autoimmune disorders, I feel as though I might be the victim of "tunnel vision" of sorts; in other words, each doctor is concentating on his area of expertise, and the rest of me is "falling through the cracks". Actually, my endo is trying to address the autoimmune aspect of my conditions within the confines of his speciality, but I'm still wondering if I should be trying to find another rheumy, or, possibly, an immunologist.

How does one find an immunologist? Any time I see a doctor described as an immunologist, he/she is also an allergist -- primarily the latter. I live in NJ, not too far from several teaching hospitals. Would they be good places to start? Would I be better off with another rheumy? Should I not bother with either, and just stick with the n/m doctor and the endo? (I should point out that I am taking CellCept for the MG and might eventually need to begin IVIG.)

I would appreciate any advice or suggestions regarding my dilemma.

Best,
Pat

Hi,

I'm brand-new to this site and have a general question about immunologists, but first, a little background:

I suffer from three (so far...) autoimmune disorders: Hashimotos' thyroiditis w/ hypothyroidism, myasthenia gravis, and vitiligo. These have all been dx'ed in the last 10 months, despite my having been fairly sick for at least 10 years.

I am seeing a neuromuscular specialist for the MG and an endocrinologist for the thyroid disorder. I also have fibromyalgia, but I have not been to a rheumatologist in a couple of years because mine stopped participating in my insurance plan.

In seeing the two specialists for the autoimmune disorders, I feel as though I might be the victim of "tunnel vision" of sorts; in other words, each doctor is concentating on his area of expertise, and the rest of me is "falling through the cracks". Actually, my endo is trying to address the autoimmune aspect of my conditions within the confines of his speciality, but I'm still wondering if I should be trying to find another rheumy, or, possibly, an immunologist.

How does one find an immunologist? Any time I see a doctor described as an immunologist, he/she is also an allergist -- primarily the latter. I live in NJ, not too far from several teaching hospitals. Would they be good places to start? Would I be better off with another rheumy? Should I not bother with either, and just stick with the n/m doctor and the endo? (I should point out that I am taking CellCept for the MG and might eventually need to begin IVIG.)

I would appreciate any advice or suggestions regarding my dilemma.

Best,
Pat


Hi Pat,

This may not be of much help but I did want to reply anyway.

I too have Hashimoto's, am currently being tested for MG, and have been and am being tested for everything under the sun currently; with the doctors now concentrating on possible lupus, mixed connective disease....anyway something in the autoimmune disease arena due to a very high ANA titer - 1:2560 speckled pattern. I have felt generally ill (often significantly so) for a couple years now with numerous symptoms and abnormal MRI (with numerous white matter brain lesions), abnormal EEG's with suspected seizures too.

So... I have felt the "tunnel vision" effect of the many "specialists" who do just that - rule in or out stuff that is within their area of expertise and then refer you to another doctor in another area or just shrug their shoulders and tell you "you may just have to learn to live with it" ..>! despite several ER visits due to symptoms and pain. I told the last doctor who said that, "Well.... obviously I AM LIVING with it or I wouldn't be here but that doesn't make it go away or make me want to just accept pain and suffering as a way of life. I am TRYING to find out WHY I feel this way and with all due respect - JUST AS YOU WOULD IF IT WERE YOU! DOCTOR." Then I thanked her for her time and said at least I know it is not ".........." (whatever) and that in itself helps me along this long, very arduous road to understanding what is going on in my body.

SO.. .now I have an appointment with an autoimmume specialist at a large renowned teaching university in my state. I sent them an email addressing the many symptoms, test results and doctors I have seen, etc. and they sent me back a letter with an appt. date with the chief of staff of immumology there.

So... from my viewpoint and where I am right now......YES, do your best to get an appointment at a good teaching university... You may even want to contact several at the same time and see what kind of responses you get. (I have) And then carefully research the doctors they set you up with, the track record of the facility and the doc, their experience, etc. After all... we shop for a car for goodness sake...! Why not something that is so very important to our life - OUR HEALTH...!

Whatever, it is your decision and if you decide not to now, maybe you will later, maybe not. I personally am being driven by a need to know why I feel like I am dying often and feel halfway there at the age of 50 (just turned that!), when I used to be very active and have so much to live for - kids, grandkids, just life!, etc...

It is so hard today to find a doctor who is not so overwhelmed and stressed out by pressures of insurance rules and time that they will take a real interest in you - more than the quick, cursory, well....it's not this so....??? But ANY doc worth his/her salt will accept and care enough about you to be supportive of your seeing whoever it takes to try to get better... AFter all... isn't that what their profession is supposed to be about....!?!?!

Sorry, so long...... Hope you get at least something out of all this...

Take care...

Linda :wave:

Well said, Linda! Let us know how this goes for you. :)

Hi, Linda,

Thank you so much for taking the time to write such a thoughtful, articulate response to my post. Your comments and obversations were inordinately helpful. :angel:

First of all, I have to tell you how very sorry I am about the suffering -- both physical and psychological -- that you have endured over the last few years. Your courage and resiliency are an inspiration.

I, too, have been derided in my efforts to find out why I was so sick, tired, and in so much pain for some 15 years now. My many visits to specialists were labeled "doctor-shopping", and the only condition that my friends and family members could agree upon was "hypochondria". I am certain that the doctors I saw agreed with them, but most of them were more subtle about it, telling me that I just needed to "exercise", "get a job", and "'get over' my depression" (I was indeed depressed, and am still taking antidepressants). One neurologist, however, told me, as he walked into the exam room, reading over my new-patient medical history form, before even looking at me, that he usually advised patients "who present with so many complaints that they should see a psychiatrist."

Even now, there are those who question just how much the hypoT and the MG are causing my symptoms, and how much is due to, well, me. My endo thinks that as long as my TSH and T4 and T3 values are "normal", then I am "fine". But this is the winner: Despite a positive SFEMG, my neuromuscular specialist doesn't think that my muscle fatigue and weakness are caused by MG. I have been suffering from chronic double vision for two years, so he is willing to "grant" me a dx of ocular-only MG, but he does not yet believe that I have generalized MG, because his clinical exam of me at my first appt. (in the a.m.) was "normal" with respect to muscle strength. "Normal"??? I can't even take a shower every day any more, never mind doing any cooking, cleaning, or shopping. He seemed to think that because I could get out of a chair without using my arms (at that one appt., which, as I said, was in the morning) and was able to climb some stairs down the hall (which I often can't do), I could not possibly have generalized MG.

Do even the most severely disabled MGers just wake up one day, or week, or month and find themselves completely incapacitated? Isn't it a fairly gradual process? Isn't it possible that I have what might be clinically called a "mild" case of MG, but it is still generalized?

The n/m guy must have "gotten to" my endo, because when I saw the endo about ten days ago he started questioning the extent to which my muscle weakness was truly caused by MG. He ordered blood work to rule out myositis, which I don't think I have. I really think it is MG, complicated by hypoT and fibromyalgia.

Does it make any sense to you that when I got the positive SFEMG result, I actually felt "happy"?? Finally, after all those years, I had a diagnosis that was "legitimate" in the eyes of everyone (hypoT and fibro were not deemed to be so), and now even that is being questioned by the so-called "experts"?? I don't think I even have to ask you if you understand how frustrated I feel right now.

This is such a coincidence, Linda, but we are just about the same age (I'll be 49 in August). I wonder if our age and gender are why we have not been taken seriously by so many doctors in recent years.....

Speaking of age, I went into menopause at 46, almost three years ago. I was dx'ed with osteoporosis, not "-penia", at the same age. My endo did say something interesting to me at my recent visit. He believes that my relatively early menopause was due to an autoimmune reaction against my ovaries. Apparently, some research is being conducted right now to look into possible a/u disorders affecting the ovaries.

At any rate, returning to my original question in my original post, I truly appreciate your sharing your own journey with me. Thank you for understanding my frustration and for your excellent advice. It never would have occurred to me to e-mail the heads of Immunology at my area teaching hospitals, before wasting their time and mine in making appts. to see them.

The big question is "Should I tell Drs. N/M and Endo first?" :nono:

I can't believe that you're just now having a lupus work-up, having been so sick for so long, and having such a high ANA (my highest was only 1:320, and I've been tested probably a dozen times over the years for lupus).

And what conclusions were drawn about your abnormal MRI? With the presence of the white lesions, I would have thought that MS would be a likely dx. (Have you had any EMG studies yet, or will they be part of your MG work-up?) But what do I know? I have MG, but I really don't have MG!! :rolleyes: Along with everything else, it's all in my head.... :p

You sound so sick and so desperate, Linda, and I wish there were something I could do to help you. As horrible as I feel, I am not in nearly the same shape that you are.

I do wish you tons of luck at your appt. with the immunologist and with your pending and upcoming lupus, MCD and MG work-ups. You will have your answers soon, and, yes, you will live a long, happy, and productive life!! :) When you feel down and become convinced that such a future is not meant to be, please know that Pat in NJ is cheering you on and praying for you.

If you don't mind and are up to it, please keep me posted. I will be thinking of you often.

With warm wishes,
Pat

P.S Belated Happy 50th Birthday wishes! :eek:

P.P.S. Have you considered exercising?!?!?! :D

Hi Pat,

I'm glad when I can be of "support" to someone going through the agonizing journey of chronic illness since I am too and we often just need a listening, sympathezing ear... as opposed to a brush off like: it's probably depression, stress, etc, etc, etc. or as you said... you need to get out more, get a job, exercise more or just get over it... :confused: or the hypochrondriac diagnosis... ha.. I am a thinker by nature and ramble a lot sometimes so never know how folks are going to take me...!

I too have been helped by responses here and tho more often than not as of late, I am just too tired to even respond.. glad I can return a caring deed whenever possible... :) There is much courage and resiliency to be learned of and learned by reading posts in this board...=)

I too have recently been diagnosed with fibromyalgia and it is NOT a "fictitious or made up" disease as one doctor said but a very real entity. Just think of how many of the today recognized (by the medical society) diseases were however many years ago never even thought of and then had to go through being "officially" deemed REAL by, like you said, the so-called "EXPERTS" before being accepted... (the experts are the ones who lives with illness and why, just why in the heck do they even have the gall to think we WANT to (FOR ANY REASON) have to keep going to them for illness.... ! If we just "learned to live with everything... we'd not have the so called "modern" medicine that we have today... and they wouldn't have their current job..>! :rolleyes: Learning in whatever area of life is a lifelong process!

I too suffer from chronic double and blurry vision and often just about collapse trying to climb the basement stairs... wow! I had a hysterectomy last year due to massive fibroids (I had 6 surgeries last year). I have Interstitial Cystits (which is suspected to be autoimmune related), had stoneless gallbladder disease (which is only seen in about 5% of gallbladder disease cases and thought to be autoimmune related), gastrointestinal problems, IBS, erosive esophogitis, recent kidney problems (was in ER for this 2x a few weeks ago), and anemia too... but don't ya know..... I'm just stressed, and depressed... Welllllll DUH...! I got to the point where I like to say that now..."uh... yeah, with all this going on, I think I have a right to be... Do you really think I've always been this way, so it's normal for me, and I'm racking my brain, my pocketbook, risking losing my job (when I still worked) and time out of my life trying to figure out what is wrong just for the heck of it...? @^%#*^$%(*&&(#$#@^$#^%@$

It is widely thought that autoimmune disorders are at the base of many things now... makes sense to me...! As far as getting out of bed without using your arms... some doctors just seem to not consider the fact that the small, very short amount of time you see them is rarely indicative of how you are able to perform on a sustained daily or regular basis. They send you to a psych doc for a half hour (at most) to test your ability to think by asking you a few "DUH" questions ..... Well... some half hours are better than others depending on how you feel at any one given moment! and to be ill.. you do not have to be laying on the floor at their feet for goodness sakes ! uh......or do you....? :cool:

As far as answering much about MG right now, I still haven't researched that too much (I like to research) but I'm sure other things going on in your body can aggravate it just as with any disease. But I did read that MG gets better with rest so getting out of a chair w/o using your arms is certainly not of any significance. Where in the world do some of these doctors get their licenses...??!! :eek: Ok, ok... I really do try to remember that that doctors are just people too.. who get tired, only have so much time and deal with life just like we do... That's why I like to research a lot. I find I often know much more than they do... about a certain condition but then... it's my body and I have to assume some responsibility for that. I'm glad for the computer age...=)

I don't know... telling my PCP about seeing other docs depends on how I'm feeling at the time. He doesn't really seemed affected unless it is something he has recommended. Of course, if & when I have to go back to my PCP, I let him know what's going on... since one doctor really does need to know at that point what the other has found (or not found).

Haven't had an EMG ... yet... MRI's were done for suspected MS but with neg. spinal taps...pretty assured not that. And tho, I have thought from beginning (several years really with me too) that I might have lupus or something like lupus, they concentrated on the MS possibility for the last 18 months more... I had a ANA of 640 last Aug. Then 160 this Feb. which the rheumy shrugged and said was probably due to Hashimoto's. BUt then when it came back 2560 in April, the neuro doc asked the head of immumology about it and just had more tests run for immune disorders last week. They wanted to send me back to the same rheumy I saw before but although, he is very nice, he specializes in RA, bursitis, ostearthriitis and gout and shrugged when I asked him about fibromyalgia (PCP diagnosed that)... I told them I wanted to see someone whose interest and #1 specialty is immune related diseases such as SLE, MCTD, etc. and they wouldn't give in. So... I took the initiative once and got myself an appt. with the immumologist I spoke about who is at a renowned teaching hospital in my state. Then when they sent me the appt. (July 1) paperwork, I got on-line and researched just who this doctor is, etc. Given my ever increasing ill health, I simply do not want a "newbie" this time. I've spent enough time being bounced back and forth between and waiting for appts. with several doctors.

I don't know that I am in any way worse off right now than you or anyone here. When your sick, your sick! and after awhile, through the process, you begin to learn better what to do or not to do -- and like life... that's a never-ending (least til your dead!) process.

As far as exercise goes... I do walk when I can... sometimes I'm so fatigued (my muscles burn intensely too) I cannot shower or even brush my teeth... and I eat mostly, microwavable, frozen foods. I do get periods of "relative" feeling better... but they do not last long at all and I am learning to guage my activity carefully - to keep reserves for necessary shopping, etc. All it takes is just one day of "normal" activity (ignoring how I feel) and I'm usally laid up for days afterwards... ie. my son's graduation Sat. -- felt pretty good for it but really felt miserable yesterday and not too hot today.

Hey... just had a thought... when people say it's all in our heads, maybe we should respond with "well, now it seems if it were all in our head that we could just THINK it away..." hmmmmm...?
:p

Thanks for the birthday wish. =) And I've always heard you were supposed to fall apart AFTER 50... not before...=)

Will try to keep in touch... Here's hoping & prayers for you too... : angel:

Take care...Linda

I Have A Question How Did They Diagnose You? Ana Test? And Why Did It Take So Long?

Hi All,
Just reading through here again and find that so many of us have so much in common! I have MS and CVIDS and many of the other "things" that those things cause. Before I forget (that is another one of my problems) Just because you have a negative spinal tap for MS (no oligoclonal bands) does not mean that you do not have MS. My spinal taps have never shown oligoclonal bands and I definitely have MS. But I went for years being told things like, "You are a single mom raising 3 kids, working, going to school....Dear you are just stressed. Take this Valium and go see this Psychiatrist. I'm sure your double vision, falling, pain and fatigue will subside." Right! The really sad thing is that I was a nurse and believed them. You know, I believed them right into the Psych hosp and ECT. After 2 of those treatments a young doctor bumped into me as I was creeping along holding on to the wall and stepped up to the plate. He wasn't even my doc, but had me moved off the unit and started testing in depth for MS. He was my angel! Getting a diagnosis of MS was almost a relief after 15 yrs of BS! Fortunately, God was watching over me again when a doctor that I had a chance visit with suspected the CVIDS also. I have a lot of symptoms that there isn't much anyone can do anything about, but the IVIG treatments have helped both the MS and the CVIDS. I take Neurontin for the nerve pain, antidepressants for the obvious, wellbutrin to help with cognitive problems. I am also hypothyroid and am medicated and monitored for that. Now I have developed an anemia of unknown origin and am taking Procrit (Epogen) weekly. Fatigue and vision problems, balance, etc. I have just learned to fit into my lifestyle. NOT rule my lifestyle, mind you. Like you all. I have a lot of living left to do! I'm 55, not dead! In fact, next wk end I am flying cross country to visit my kids, grandkids and brother on the W Coast. I'm "running away" for a whole month...till my next IVIG treatment is due :)
Thank you all for sharing and letting me share with you. This is a great site!

Wow! What stories!

Catbirdpondlady,

I am glad that you mentioned the Wellbutrin for the cognitive abilities. Have you seen the post on the MS board from our member PURPLE2067 (Elise). If you have, great! If not, would you post to her. thanks! What was the clincher that dx'd your MS? Have fun with your family and getting out and about! :wave: Hugs to you!

Hewie and PATNJ: I hope you get answers soon. I just feel it is awful enough to be ill and have to endure the amount of time each of you have to find out the cause. Hugs to you both! :angel:

Hi, Linda,

Thanks for your most recent reply. I spent an hour and a half responding to your message (it does take me a long time to remember the words I want to use, and even the thoughts I want to express :confused: ) -- and, suddenly, just as I was about to post it, it vanished into thin air, into that vast Black Hole of cyberspace).

I was so depressed by what happened that I had to crawl into my own hole for a few days and lick my wounds...

I won't attempt to recreate my original response; I was mostly recounting my own experiences of the last 15 years, as I dealt with doctor after doctor, all in a mainly vain attempt to find out what was wrong with me, so that I could get better and go on to lead a fariry normal life, including being a normal wife to my husband and a normal mom to my children. They deserved better, too.

The idiots who mocked me to my face and behind my back must have thought that I was having a jolly good time as I wandered from specialist to specialist, only to be met with indifference at best and downright ridicule at worst. Yes, indeedy, I was having ball spending what should have been the prime of my life, with a husband and two small children, in doctors' offices and in bed, watching the world carry on without me, feeling sometimes as if They were right, and that it really was "all in my head".

To this day, my husband truly believes that I enjoyed living like that, a pathetic "hypochondriac" who must have craved attention or was too lazy to be an active participant in life. Even with the MG dx, he still doesn't really believe that I'm sick, that I'm exaggerating my symptoms, "milking" the dx for all it's worth. (Yes, our marriage has suffered, perhaps irrevocably. I know that it hasn't been easy for him to have to pick up the slack created by my limitations, but, jeesh, I didn't ask for this, and I sure as he** don't want it! The fact that he has had so little faith in me, his supposed life partner, has caused me far more pain than any physical condition with which I have had to deal. Our 25th anniversary will be at the end of September. It would be the saddest day of my life, except that I will also be remembering that my two precious children were conceived in love during happier times in that marriage, and they are the greatest joy in my life.)

Pity party is over... yippee!

Linda, I cannot imagine how you have endured all that you have had to contend with:

>>I too suffer from chronic double and blurry vision and often just about collapse trying to climb the basement stairs... wow! I had a hysterectomy last year due to massive fibroids (I had 6 surgeries last year). I have Interstitial Cystits (which is suspected to be autoimmune related), had stoneless gallbladder disease (which is only seen in about 5% of gallbladder disease cases and thought to be autoimmune related), gastrointestinal problems, IBS, erosive esophogitis, recent kidney problems (was in ER for this 2x a few weeks ago), and anemia too... <<

Good God. How do you carry on every day? I suppose as in most situations, it's "one day at a time", but that cliche gets old pretty quickly. I do pray God will continue to give you the strength that you need to face whatever else lies ahead for you. I am keeping all digits crosed that your appt. with the immunologist will bring you the answers for which you have been waiting -- or at least be the start of a successful journey in that direction.

In the meantime, have you gotten the results of your lupus/MCD/etc. work-up yet? Your ANA level is through the roof... I suspect that they will ultimately dx lupus, after all these years having dismissed it. Your recent kidney problems would also tie in with lupus.

Unfortunately, because of the "clustering" of a/u disorders, even a lupus dx does not rule out another a/u disorder, such as MG. I'm sorry to keep harping on that, Linda, but your symptos of blurred, double vision, your difficulty in climbing stairs, and the weird "burning" sensation in your muscles all suggest MG to me. (I get the "burning" whenever I exert my arm and leg muscles; it feels just like "the burn" of days long gone by when I would exercise and overdo it a bit. Of course, there's also a different kind of "burning" that I get that is more fibro-related.)

I hope that you will keep us posted on your visit with the immunologist in a few weeks. I might be in Massachusetts for my mom's b'day (July 1!) for a few days that week, if I am up to the trip. My daughter would drive me and my son up there, and I feel guilty expressing concerns that I won't be "up to" the trip, but it just sounds like a lot for me to handle physically...

But even if I do go up to Mass., my thoughts will be with you, and I hope that I will find a "full report" from you when I get back (probably on the 2nd).

Best of luck, Linda. Keep the faith... it's something that you are apparently quite good at, anyway!!

Take good care.

Pat

Hi,

My MG diagnosis came about becuse of chronic double vision that was present since August 2002. Prior to that time, I had suffered from DV only occasionally for about 10-12 years. It gradually became more and more severe and frequent starting in 2000-01, perhap earlier.

I consulted a neuro-ophthalmologist, who immediately suspected MG, but the standard antibody test (AChR) was negative, as were an EMG and a repetetive-stimulus EMG. The next step in ruling out MG was a single-fiber EMG (SFEMG), but at that time, the only two doctors in New York (I live in New Jersey) who had the expertise to perform the procedure were not participating in my insurance plan.

I just "lived with" the double vision until I found out this past winter that one of the specialists had become approved as a participating provider in my plan. I had the test, and it was positive.

At the moment, my neuro-muscular specialist is convinced that I have ocular-only MG (because of the double vision); but he doesn't believe that my arm and leg weakness is "severe" enough to be due to MG (if I have full-blown MG, I would be deemed to have the "generalized" form).

Of course, I think he is way off base, because the presentation of my proximal weakness is classic for MG. Indeed, compared to severely affected MG patients, I must have a "mild" case, but I don't understand why he won't allow for that. My arms and legs tire rapidly upon exertion -- exertion of my arms defined as washing and/or drying my hair, showering and toweling myself, stirring a powdered drink mix into a pitcher of water, just about every household chore there is; exertion of my legs is defined as climbing stairs, or walking from the entrance to the supermarket to the far aisle where the dairy and bread products are located.

There is a second antibody test for MG, which I will be having done in a couple of weeks, the anti-muSK antibody test. Approximately 50% of generalized MG patients who have negative AChR tests will test positive for anti-muSK.

I have had a slightly elevated ANA for at least ten years -- usually around 1:160. I was diagnosed with Hashimoto's thyroiditis (which is also autoimmune) about eight years ago, but was not deemed to be hypothyroid until August 2003, despite the fact that my overall health had been deteriorating in the interim. My symptoms were continually being attributed to fibromyalgia and depression. Nobody was really looking beyond that, although I was periodically tested for lupus, mixed connective tissue disease, and similar rheumatological disorders, which were always negative.

I hope this helps. Please let me know if you have any more questions.

Best,
Pat

I am appalled and very saddened by the indignities that you suffered for so many years before you received your MS diagnosis. My own struggles in coming to the diagnoses of hypothyroidism and MG pale in comparison to what you have had to endure. My heart goes out to you, sweetie, for your needless suffering and for those "lost" years -- but you are clearly on the right track now, moving forward with optimism! :) I applaud you and wish you only the best that life has to offer you.

Enjoy your upcoming "getaway"... I'm sure that you will cherish your time with your family, as they will surely cherish their time with you. May you return with many special memories that will continue to bring you joy for years to come!!

(Good luck with your next round of IVIG :eek: )

Best,
Pat

Thanks, californiasunflower, for your kind words. I am in the company of some extremely courageous women, and I feel like a Big Baby :o for complaining about my own problems.

I hope to learn a lot from these wonderful ladies about coping with dignity, whatever comes my way. :)

Best,
Pat

Hi,

I have had a slightly elevated ANA for at least ten years -- usually around 1:160. I was diagnosed with Hashimoto's thyroiditis (which is also autoimmune) about eight years ago, but was not deemed to be hypothyroid until August 2003, despite the fact that my overall health had been deteriorating in the interim. My symptoms were continually being attributed to fibromyalgia and depression. Nobody was really looking beyond that, although I was periodically tested for lupus, mixed connective tissue disease, and similar rheumatological disorders, which were always negative.

I hope this helps. Please let me know if you have any more questions.

Best,
Pat

Pat,

I too have had the same ANA score as you as well as autoimmune thyroiditis. My neuro thinks I have MS and/or connective tissue disease that affects the eyes because I presented with inflammation and hemorrhaging similar to what someone who has lupus or MS would present with, but like you, the testing is negative. Isn't it remarkable that the ANA score and Hashi's as well as the affected eye are a medical hx of ours and we both are dragging. I don't have MG. MG, mild or not, it has disrupted your life.

There has to be a connection as to why the breakdown of health adversely affects the thyroid, the eye, causes positive ANA, and leaves one overall fatigued, with muscle wasting. What is it!!!!!!!!

I'm now having tremors/jerking. Can Hashi's really screw us up like this? Is this ocular thyroid problems. Is there some expert somewhere who knows about how the thyroid can really wreak havoc?

I am so sorry to hear about the affects the illness has had on your partner. Has he taken any time to research any of the symptoms/conditions you've had?

It really should be no surprise to any expert that the emotions and cognitive abilities get adversely affected due to the affects of the illness. The body is a whole and I doubt any one who is ill without the diagnosis is not going to be skipping through life singing "Skip to my Lou" with a basket of poseys to hand out! If proper treatment could be issued, most likely everything else would fall into place, including the smile!

Good luck on your trip and I hope something wonderful happens between now and Sept., that you and your husband can start a new life together by celebrating 25 years and having beautiful children too! Hugs to you!

Symptoms of Autoimmune Diseases

Spouses and family members, even though someone may look perfectly healthy, if they have an autoimmune diseases, they are truly ill. It is not in their head.

The following symptoms are common in many, if not all, autoimmune diseases.

Fatigue: It’s not a good fatigue, from working hard, but an anxious, uncomfortable fatigue related to lack of sleep. Or a disruption of the energy production mechanism in cells, either from lack of oxygen, increased toxicity, infections or a malfunction of the mitochondria.

Sleep Disturbance: About 80% may wake up three or four times a night, or in some cases you don’t wake up, but in the morning you still feel like a truck ran over you. The reason for this is that subliminal seizures kick you out of stage 4, Delta sleep, to stage 1 sleep so you can’t sleep deeply and wake up not rested.

Short Term Memory Loss: Because of the low thyroid and heart complications typical in autoimmune diseases, there is a decrease in blood flow to the left lobe of the brain causing an oxygen deficiency in the brain. This can lead to the memory loss and forgetfulness that is common in autoimmune diseases.

Emotional Liability: Someone may cry more easily, be more anxious and fearful. This is caused by the illness, and is not a psychological reaction!

Depression: As with the emotional symptoms, the hypothalamus is involved. This is not clinical depression, but literally has a physical cause that is sometimes experienced as a deep depression right in the heart.

Low Thyroid Function. About 85% have this symptom, but only about 10% of the time does it show up on a typical thyroid test. If you get tested, have both a T3 and T4 done. About 10% have excessive hair loss. For most everyone, a poorly performing thyroid will show up as subnormal temperatures.

Gastrointestinal Problems: About 75% have this symptom. Can be anything from gas, bloating, cramps, diarrhea or constipation to hiatal hernia, irritable bowel syndrome or Crohn’s Disease. Sometimes taking a simple homeopathic remedy like arsenicum album, 6x or 6c and make a difference with this.

Swollen Glands, Chemical Sensitivity, Headaches: Allergies often develop, usually after 3 to 5 years. Eyes can be light sensitive for 6 months or longer. Dry eyes can develop. About 20% experience a very uncomfortable disequilibrium of vertigo, almost an out of body feeling that can be most disconcerting.

Pain and Fibromyalgia: Often diagnosed as a separate illness, fibromyalgia is basically a symptom that can occur with any autoimmune disease. If you have it, you’ve got pain. Often in the neck and in shoulder muscles extending down the back. Can be in the joints and muscles also.

Low Blood Sugar.

Candida Yeast Infections: These are very common. Check your tongue. If it has a white coating, you have it. Or take the spit test you will read about later. Women may get vaginal yeast infections caused by candida overgrowth. A candida infection on its own can cause a number of autoimmune type symptoms. Sinus infections often are caused by candida.

Tingling hands. Ringing ears. Cold toes. Cold fingers. Metallic taste in mouth. Caused by poor circulation and who knows what.

Overdoing: You overexercise or overwork when your are feeling good, and then feel worse for days afterward. This can cause serious problems. In healthy people the body shuts down when the anaerobic threshold is reached as a lot of pain is experienced. This warning does not occur if you have an autoimmune disease. Instead, the body continues to exercise and experiences no pain as the lactic acid builds up, and the body ends up recirculating carbon dioxide. This is not a healthy thing to have happen to you. It is important not to push too hard when you start recovering, or this will set you back and wipe you out.

Fluttering Heart. Panic Attacks. Rapid Heartbeat. Mitral Valve Prolapse. Usually blood pressure is low, though it can get high later on. The heart underpumps blood because it is getting incorrect messages from the autonomous nervous system. The body’s feedback loop picks this up and over-reacts. And you get these symptoms.

If you have autoimmune illness, it is not likely you have all these symptoms. However, you will have many of them to one degree or another.

Thanks, californiasunflower, for your kind words. I am in the company of some extremely courageous women, and I feel like a Big Baby :o for complaining about my own problems.

I hope to learn a lot from these wonderful ladies about coping with dignity, whatever comes my way. :)

Best,
Pat

Don't you dare shame yourself. You are not a Big Baby. Here, you are validated and supported and completely understood. I know you have struggled hard and I know that your journey has been difficult. It is like climbing a mountain that has no where to rest and you can't even see the point of where you're trying to reach for the clouds hidding the peak--your destination. No one can see beyond the clouds, not even the doctors. That's pretty scary for us dealing with symptoms w/o knowing the cause while needing treatment. So here you tell us what is going on because we understand and care and look forward to giving you any support.

Thank you for the kind words.
My life indeed is good!
And the problems that I have been through make me a much better person. I certainly didn't think so when I was in the midst of them, but those experiences have enabled me to be the woman that I am today........and I like her!
Granted, some of the "losses" were tough. I really miss being a nurse even now, 9 yrs after I was first disabled. But I do have time to do other things that I could never do working full time. It all is working out for the best. And you know what makes the biggest difference? Changes in attitude. Jimmy Buffet was right! Ha Ha ;)
Love, Penny

Hi, sweetie,

Sometimes I wonder whether the frustration and despair we feel over not having proper diagnoses and the resulting attitudes of ridicule and doubt by our nearest and dearest :rolleyes: are in fact worse than our physical conditions.

My husband has diabetes; of course, he regards this condition as "valid" and is an "understandable" explanation for those times when he is not feeling well. My MG, hypoT, and fibro are, in his mind, not as "real" (especially the latter two), because the diagnoses of these disorders are more difficult to confirm and the disorders themselves are more difficult to treat. Additionally, the symptoms of M, H and F vary considerably from one patient to another, and vary even within the same patient, depending on a number of factors (too many to list here!).

When I was first dx'ed with Hashi's about eight years ago, I was stunned that I was not started on thyroid meds then, but was told that as long as my thyroid function remained "normal", I did not need them. In other words, I was supposed to wait until my thyroid started to shut down before receiving treatment. :confused: :confused: :confused:

As recently as July 2003, when my TSH, which had slowly been climbing over the years, reached 5.47, my PCP still wasn't accepting that I was "finally" hypo. She wanted to wait another three months and retest. (And this was after the American Association of Clinical Endocrinologists had released, in November 2002, new recommendations that the high end of the traditional reference range for a "normal" TSH be lowered from 5.50 to 3.00.)

I had had it at this point. I could hardly function at all and said to myself (only slightly sarcastically) that "I could be dead in three months!!" and went on my own (thank God for a no-referral ins. plan) to an endo the next month, who immediately confirmed hypoT. I was put on T4 medication, Levoxyl.

I immediatelybecame very involved with an online thyroid support group and learned a lot about the many manifestations of thyroid disease and the vagaries of thyroid testing: e.g., Free vs. Total T4 and T3; optimal lab results (usually mid-range) vs. the clincal merits of the full spectrum of "normal" reference ranges; the relationship between levels of T4 and T3, and their relationship to the TSH.

Then there's the controversy over prescribing T3 meds in addition to, or instead of, T4; and the bigger controversy surrounding the prescribing of non-synthetic thyroid hormones, such as Armour.

Far too many doctors (even endos) think that treating hypoT is a "simple" matter of "popping a little pill once a day". Ha! :rolleyes:

I assume that your Hashi's has led to an "official" dx of hypothyrodism (?). Could it be behind your eye problems? Perhaps. Far more commonly, though, thyroid eye disease, or Graves' Ophthalmology, occurs in patients with hyperthyroidism. I, too, had researched the possibility that my double vision was thyroid-related, and had even sent an e-mail to Elaine Moore, the author of a fairly new book about Graves', asking her about the prevalence of TED in hypoT patients. She replied that it wasn't so much the hypoT that was the governing factor in dx'ing possible Graves', but the presence of autoimmune thyroiditis that could be a contributing factor; in other words, it would be the Hashi's and not the hypoT that might cause TED in non-Graves' patients.

I never did pick up her book; you might want to. I understand that it's an excellent resource for those with, or concerned about, TED.

BTW, when you mention hemorrhaging, do you mean in reference to your eyes? I don't remember encountering that as a symptom of TED, but my brief research into that topic focused on double vision, which was my main concern.

Do you mind telling me what tests you had that ruled out MG? If they didnt include a SFEMG or at least both antibody tests, IMHO, it really can't be ruled out yet. The SFEMG is also a useful diagnostic test for MS.

You mentioned "muscle wasting", which caught my attention. My endocrinologist, who is "in cahoots" :p with my n/m specialist about my MG not really being MG :confused: is on a "mission" to find other autoimmine disorders for me to have. (I also have a slight case of vitiligo.) I'm waiting for the results of a huge slew of tests he ordered, including tests for myositis, which can mimic MG in some of its forms. Myositis is even more likely to cause true muscle wasting than MG.

I don't know how much research you have done re Hashi's and hypothyroidism, but I recommend that you look into books and articles by Mary Shomon, and by Richard Shames M.D. He's a little too "holistic" for my taste, and I know of people who have seen him in his clincal practice and were disappointed, but he is one of the few doctors who does a least treat thyroid disease with the respect that I believe it deserves.

Mary Shomon is a layperson with extensive experience in researching and writing about thyroid disease.

Please tell me more about the tests you have had for both MG and MS, any rheumatological testing you have had, and your experiences with the doctors whom you have consulted since you became ill. If you don't mind, I'd also like to hear more about your "timeline" of symptoms. I know that you've been a member of this forum for a while, and are probably sick of reliving your history, but I'm brand new here and don't know the "old-timers" yet! :-( Thanks.

Thanks, too, for your good wishes about a "happy" 25th wedding anniversary, after all. From your lips to God's ears! :)

Best,
Pat

You are such a sweetheart for making me feel so welcome here! I love your analogy about climbing the mountain whose peak is hidden in the clouds... It so perfectly describes the day-to-day struggles that all of us who have a personal "acquaintance" with autoimmunity face.

We're trying so desperately to reach the top, but we don't know what the "top" is. And not only that, but our doctors aren't even sure that there is a "top" (which is why the dx of depression, anxiety, lack of exercise, etc., come so easily to them). And for some of us ::sniff::, our loved ones want to push us off that top! :eek:

The "silver lining" of the cloud that obscures the mountain peak is that we discover that somehow we are able to find in ourselves the strength to inch our way up to the top -- and not only that, if we open up our hearts, as well as our eyes, we find that we are really not alone in our struggle. Support and friendship can be found in many places and take many forms. :)

Thank you again for your compassionate words.

Best,
Pat

Miss Sunflower,

Very interesting stuff! Thanks for passing it along.

The section about heart symptoms was particularly interesting. I have mitral valve prolapse and a recent diagnosis of vasovagal motor response. The cardiologist I consulted for frequent episodes of near-fainting attributed these episodes to the ever-increasing anxiety I have been experiencing. He said that the underlying anxiety causes a rise in blood pressure that the heart tries to overcome by generating a rapid drop in blood pressure, which in turn induces the near-fainting episodes.

In your description, states of anxiety/panic are viewed as a result of the disturbances in the autonomic nervous system, but I think it's all cyclical, anyway, because the near-fainting episodes, which my cardio blamed on my anxiety, also cause symptoms of anxiety and panic.

Not surprisingly, I also experience most of the other conditions/symptoms on the list. It's mind-boggling to consider the overlapping and clustering of other, seemingly unrelated, conditions that are shared by so many patients with autoimmune disorders. Can it be a coincidence???? I don't think so!!!!

Thanks again for taking the time to share your handy-dandy list. Now, if ony there were some way to turn it into a screen saver for a Certain Other Person's computer!!!

It's late. Nighty-night!

Pat

Hi, Penny,

Good for you! :) Yes, it all boils down to attitude. I have often heard that though we cannot change many of the circumstances that surround us, we can change how we deal with the challenges that we face. Yes, of course, I have my bad days, but for the most part, I try to look for happiness wherever and whenever I can find it. I also remind myself daily that no matter how difficult my life might be, many others suffer far worse fates.

My God, there are children dying of cancer as I write this. There are children going to bed hungry or who are being abused in their beds by someone who claims to love them.

It's all a matter of perspective. And just think about how much control we really do have over our lives when we have the power to control how we respond to what governs our lives. Glass half empty... or half full... it's all up to us!! :bouncing:

Best,
Pat

okay i haven't read all the posts under this thread so if i sound out of place i am sorry.. i have a comment to make here
i live in canada and i don't eally get to choose..and in the last month i tested postive for a rare autoimmune disorder.. the doctor had booked an appointment for me with the head rheume doctor at our teaching hospital here.. and i just got a call saying that i am going to be seeing a different doctor.. this guy is a immunologist.. so i looked him up. he also has a lupus clinic.. which means that he deals with autoimmune stuff too... maybe they look at the bigger picture. and it might be a good idea.. i will keep you posted on what happens with me.. i go next month.. what a wait

Hi,

I am so sorry to learn that you have just received a dx of an autoimmune disorder. You mentioned that it is "rare" -- do you mind telling us what it is?

Thanks so much for mentioning that the immunologist whom you will be seeing also manages a lupus clinic. As you said, clearly there is at least some overlap between the specialties of rheumatology and immunology. I think that Hewie (Linda) and I might be on the right track!

The best of luck to you at your appt. next month. We all understand how frustrating it is to have to wait so long to be seen.... obviously, you have a lot of questions and concerns and are anxious to have them addressed.

Thanks again for writing.

Best,
Pat

i spoke to my chiropactor today and she feels the same way about the immunologist... as for my vasculitis.. i beleive it is wegener's granulomatosis.. but only a biopsy will confirm that. so i will let you all know when i am going to be having that

Are you saying you have vasculitis and that the cause is Wegener's?
Has Wegener's been confirmed by the ANCA test, etc?

I'm concerned about the lapse of time between now and your appt., especially if you have Wegener's. You need aggressive treatment.

are u talking to me... :wave:
if so ...wegerner's is a primary systemic vasculitis. of the meduim and small vessels .. yes i tested positve for c-anca.. i believe there was some confusion with the doctors appointments. my gp was sending me to a rheume and then i was told that i was going to see this immunologist. m syptoms have been gradual so far and if i have any type of change i am to see the doctor right away... it usually takes longer around here to see a specialist.. like 3 to four months.. so i thought that was quick.. i live in canada

Yes! :D Absolutely, You!

Okay, sounds like you have it under control with knowing what to do if you get more symptoms. You appear very well-informed. Glad you have that specialist appt. :) Keep us informed of how you're doing!

Hi…. :wave: Sorry... been awhile. I’ve been kinda ill (more than usual!). I had the “cleaning out” thing going on over the weekend for an IVP test ordered by the urologist. I got really, really sick from that phosphate solution in the Prep Kit they give you to drink. Ugh……......... =( As if I didn’t feel bad enough already! But I have recuperated (at least some!) now though this hot, very humid weather drags me out just to go from air conditioned house on errands! And I think I have infection in my arm where I had a mole removed last week……. Gosh! Could it get any better!?!?!?

Ok, nuff about me. How are you guys doing? Patti, thanks for the laugh at this (Thanks for your most recent reply. I spent an hour and a half responding to your message (it does take me a long time to remember the words I want to use, and even the thoughts I want to express ) -- and, suddenly, just as I was about to post it, it vanished into thin air, into that vast Black Hole of cyberspace). I was so depressed by what happened that I had to crawl into my own hole for a few days and lick my wounds...)

It’s NOT funny but when I first read it so described what I’ve done more than once that I just had to laugh…=)

Yeah, though I have not had the results of the test for MG yet, I do wonder about that – still have all the symptoms (isn’t that nice..) and the chronic double/blurred vision. It was the neuro-opthamologist who ordered the test. Shame that neurologists don’t test for this more often! As far as other tests go… I’ve not heard on those either. Found out was just an anti-dna and anti-cardolipin test. So….. maybe they were negative???
Whatever, they were ordered by the neuro, not the rheumy so……. I still have that July 1st appt. which I am trying to hang onto for some hope here! He is a rheumatologist who specializes in SLE, MCTD, Sjorgren’s --- autoimmune diseases --- so I’m sure there is overlap there. But again, THIS TIME, I made sure that his area of interest and specialty is in autoimmune disorders, not just general rheumatology (which covers a whole slew of things) or allergies.

Sorry to hear about the effect on your family Pat. I guess we all know in some way or another how that is. I am not married – been divorced many years after losing the 1st husband and then my firstborn 22 years later (both to suicide), remarrying and having 3 more kids, I’ve pretty much raised my kids alone but I’ve been there even with the other family members and friends. I do agree that their beginning to think it’s all in your head and turning away hurts more than the never-ending illness. I was just thinking yesterday that it’s kinda funny to watch the world going on around you as if you’re not even there sometimes, when you feel like you are dying. And it is a lonesome spot to be in when everyone is going on with their lives, when you cannot, even though that’s the way life is. It is just too hard for most to understand that we would give anything to not have to feel continually ill and perhaps it’s just too hard on them to watch…. But I know I am one of far too many who wait years for not just a diagnosis but just keep hanging in there hoping for some relief at least even if not a cure… I know we are all in the same boat (as far as none of us is getting out of this life alive!) but sure would be nice not to wish for that to happen sooner rather than later. Yeah…=) one day at a time… cliché or not…! I sometimes wonder why I even try anymore. My kids are grown and out of the house and I’m tired. I think about those children that are dying of cancer and I feel a bit contrite but then I just feel depressed too….I feel more a burden to life now than anything. How can I help others like them if I’m too ill to help myself? Ya know…

Thanks for the symptoms list californiasunflower. Good heavens! I have all of them! And I want none!

Good luck, gals… (and guys…) Here’s wishing you some truly great times and days of fun, smiles, and laughter! :jester: And to being thankful that because of the very hard times, we can truly appreciate those good times more… :bouncing:

Man o’ man………… it’s hot here! And I HATE HEAT…! @%#*%*$^) :cool:

I don't know where you are, but it has been pretty darn hot and humid here in NC. It doesn't make any of us feel any better! Sooo.........I'm running away from home.....off to the far reaches of the W Coast.....for a whole month!! Don't you dare let me complain about anything when I come back!! I am one of the fortunate.
:wave: Penny

HI everyone! Been on the blink but was thinking of you all! Catching up....

First off, Toriumisis, are you a new member? If so, Welcome to the Health Boards! Thank you for sharing your story.

Kelly--we're waiting with you for your doctor appointment!

Linda--hangin' in there with you! :D

Catbirdpondlady--BON VOYAGE! :cool:

Pat--I haven't been tested for MG but have been tested for vasculitis and other autoimmune "favorites" :D . The hemorrhaging is in the eye. One of the tests was an ANCA; tests for APS, Factor V Leiden, Sarcoid (chest xray), blood tests and MRIs for signs of lupus or ms. I had the lovely invasive LP! Now my neuro and I are completely bonded because she's seen my CSF fluid! :D I'm being very silly, I know! :jester: ANA titers done, ESRs, urine test, comprehensive metabolic panels, tests for proteins, T-cell counts, hypercoagulable states, and thyroid check.

Thank you for the referrals to the authors on thyroid. I've been trying to do the research. With the eye problem, haven't gotten too far. So I appreciate the pointers to Mary Shoman and the other.

Yes, because I have been so inactive, I now have muscles that are limp and weak, along with the autoimmune doughy skin texture. I'll be modeling as the "Pillsbury Girl! " :D I thought that maybe we all could compete in the "Special, Special Olympics", where we can workout to firm our bodies, despite our shortcomings. Anyone who can guess our autoimmune condition---they are the winner and get us as their patient! We get treatment and well :D

Serious now, here's some literature on MG, which I hope helps you:

MG is a neuromuscular disease involving lower motor neurons and muscle fibers; it is characterized by abnormal fatigue and motor weakness of skeletal muscles that worsens with effort and improves with rest.

voluntary muscles most commonly affected in MG include the oculomotor, facila, laryngeal, pharyngeal, and respiratory track.

Clinical studies have indicated that 80% of the patients w/MG have thymic adbornalities (10% have a thymoma,a nd 70% have thymic hyperplasia). The role of the thymus in the pathgenesis is unclear.

The basic physiologic defect in MG is that nerve impulses do not pass onto the skeletal muscle at the myoneuronal junction. This defect appears to result either from a deficiency in release of acetylcholine from thepresynaptic terminals or a def. (i.e., blockage or reduced numbers) in the postsynaptic membrane receptor sites. Biopsy studies of MG patients have shown that small end-plate potentials are normal in frequency but have markedly decreased amplitudes. Postynaptic potentials are slightly smaller than normal but contain the normal # of acetycholine quanta. Research pursuing the prospect that MG is produced by an autoimmune mechanism has shown that a major feature in the pathogenesis is an attack on end-plate acetylchoine receptors by circulating antibodies. The reasons why these antibodies to acetylcholine receptors develop remains to be elucidated. There is no evidence in MG of central or peripheral nervous system disease. Involved skeletal muscles usually do not atrophy, and there is no loss of sensation. The primary manifestation is extreme fatigability and weakness of voluntary muscles.

DIAGNOSTIC STUDIES:
Chest roentgenogram, CT scan of chest
May indicate presence of thymoma

Edrophonium (Tensillon) test
Marked improvement in 30 seconds to 1 min. with improvement lasting only several mins.

EMG
Muscle fiber contraction w/progressive decremental response

Single-Fiber Electromyogram
Time response variation of 2 fibers stimulated

Curare Test
MG patient will be curarized with 1/32 of the normal curare does
Done by a neurologist w/anesthesia at the bedside, ready to intubate
Done only if all the other tests are normal or questionable
Frequently sen as the ultimate diagnostic tech for MG

TREATMENT
Surgical: trachostomy; thymectomy;bronchoscopy
Chemotherapeutic: Cholinergic agents
Neostigmine (Prostigmin) 15-90mg po qd
Pyridostigmine (mestinon), individualized size and frquency of dosage
Ambenonium chloride (mytelase) 10-25 mg po tid or qid
Corticosteroids: Prednisone 100 mg po qd
Diphenoxylate hydrochloride (lomotil) prn
Pituaitary hormones ACTH, 100-160 units qd for 10 d (rarely used)

Electromechanical
Mechanical ventilation, if necessary
Plasma exchange (plasmapheresis)

Supportive:
Physical Therapy
Occupational Therapy

ASSESSMENT; AREA OF CONCERN
Eye muscles
Ocular palsy
Ptosis
Diplopia

FACIAL MUSCLES
Masklike expression & mobility (weakness) of face
weak voice
dysphagia
choking
aspiration
drooling
nasal speech

NECK MUSCLES
head bobbing up and down

RESPIRATORY MUSCLES
Breathlessness
Resp. weakness
Resp. failure, reduced tidal volume and vital capacity

OTHER MUSCLES
sTress incontinence
Anal sphincter weakness

REFLEXES
Normal or brisk


Found in a nursing dx book. Old volume so may or may not be current info. Catbirdpondlady would probably know more.

Good evening, I am new here and have trying to read all these posts. I wanted to thank CALIFORNIASUNFLOWER for giving us some of the symptoms associated with autoimmune diseases. I have learned so much already from all of you in the posts I've read so far. I was diagnosed with Lyme disease and some other co-infections a few years ago and had IV treatments etc, only to relapse or not respond at all. Lyme disease mimics autoimmune disease symptoms but the doc said I may be actually be suffering from an autoimmune disease as well (we are currently testing for some). I must say the most frustrating thing is to have family & friends think you're a crazy hypochondriac. For most of my years I was healthy...I know darn well something is very wrong. I get this 'crazy' response from my doctors too. I wanna cry, scream or both! :eek: However, I'm glad all you guys seem to not ignore what your body is telling you...that you searched or are searching for some answer. This is where I'm at.

I went on Amazon too, I posted this to someone else. I have not read the books, but a lot of you said you have Hashimoto's. One author, Mary J. Shomon, had that for yrs before being diagnosed, and wrote books on it. I was looking at another book by her called Living Well With Autoimmune Disease: What Your Doctor Doesn't Tell You...That you Need to Know. This and another one called The Autoimmune Connection by Rita Baron-Faust, Jill P. Buyon seem good. They explain very thoroughly the diseases A-Z along with symptoms, the types of doctors to go to, and treatments; conventional and alternative. Both got good ratings & I think I'll pick them up.

PatNJ, I also live in NJ (northwest, Warren Cty) and was wondering if you ever found a good doctor? I suffer from so many symptoms that could be autoimmune related & am at my wits end here. It's hard to find a good doc! Thank you all for sharing your stories and this important information. Stay strong, best of luck, and hugs to all of you!

Hey Lymey! :wave:

Welcome and thanks! Yes, I would love to get my hands on those books you've mentioned! I'm keeping my list (use to be for Christmas) and as I see the specialist, let them know the symptoms and how they affect me. We're still looking. It does help to have a sensitive provider who is committed to finding the cause. I learned about a rare disorder that is listed on the MS board, since it mimics that and other conditions. Since it is a neurological condition, you might want to take a peek at the post on the MS board, called Susac's Syndrome.

I look forward to sharing more with you!

Cal Sun :cool:

Cal Sun,
Thanks for the warm welcome :D Ah, yes, the "lists"... too bad they're needed for more than just the holidays anymore! I have lists every day for everything, especially my 'symptoms du jour', otherwise I'd forget! And I will definitely check out the MS board. Take care & have a great nite,
Lymey

H, Lymey,

Thanks for writing and reviving this thread! I'm ashamed to admit that I had had forgotten all about it, and it was good to reread through it and be reminded of my old "buddies", Hewie/Linda, CalSun, and Kellykay. I am anxious to hear how you ladies have been, especially with respect to your various tests and specialist visits earlier this summer! (BTW, Calif, I never received an e-mail about your late June post; thanks -- belatedly -- for the MG info!)

Lymey, I'm so sorry to hear about all of the problems that you have been having. You must have been relieved (in that perverse way that only we who have autoimmune/rheumatlogical disorders can be) to have gotten the Lyme dx, but when various symptoms continued and new ones appeared, you must have been soooo frustrated. (What are your current symptoms?)

So now, the specter of an autoimmune disorder hangs over your head. I'm sorry.... but at least you are having some related tests done, and I hope that something will come of it.

I am beginning to believe the "trigger" theory about a/i disorders. You wrote the following:

>>Lyme disease mimics autoimmune disease symptoms but the doc said I may be actually be suffering from an autoimmune disease as well<<

According to my new "theory", I think that Lyme disease itself might have triggered an a/i disorder in your case. I don't wish such a thing on anyone, but I know that you know that something is not right, and it really is better to have a dx than to continue to drift through life, feeling miserable, while the eye-rolling and the whispers of others only gets more and more hurtful.

Thanks for the recs for the new books!! I'll be sure to check them out.

Oh, I live in northern Middlesex County, but my husband's mom and his two sisters and two adult nephews live in or near Hackettstown. :cool:

I'm muddling along on the doctor front. I'm still seeing the same neuromuscular specialist who still doesn't think that I have generalized MG, just ocular, but he does seem to be taking seriously my insistence that my muscle weakness is for real. He wants me to see a specialist at Columbia, but he is currently not in my ins. plan; my husband's company is changing carriers October 1, so I'm hoping that this guy will be in the new plan.

I'm still seeing the same endo for Hashi's, but he has been testing me ever since I started seeing him in December for a variety of other conditions. He seems genuinely distessed that I am still so unwell, apart from the MG, and he is determined to "get to the bottom of it." I now have vitiligo, which is an autoimmune disorder of the skin that causes areas of depigmentation.

With the onset of that new disorder, I did some more research and discovered a whole new "syndrome" that I "might" have. (I know that sounds psychotic, but you all know how desperate we get!) I'm going to start a new thread about it tomorrow.

Anyway, I saw the endo a few days ago and showed him some literature about the syndrome, and at first, he seemed to be dismissing my "theory", but the longer he looked at my accumulating labs, and at the highlighted areas of the (physician-written) article I gave him, and at me, the more he started nodding. As a result, I succeeded in convincing him to order a whole new slew of tests; and he even suggested that at some point we might want to do some genetic testing, too, since this syndrome has specific genetic features, and if I have it, my first-degree relatives, such as my precious daughter and son, :eek: could be at risk.

It's really late now (or really early, depending on your frame of reference!), so I'd better close and go to bed. :yawn:

Again, Lymey, thanks for hopping aboard, and please keep us posted on your test results!!

California, Linda, and Kellykay, I'd love to hear from all of you! I am so sorry that I "fell off the radar."

Best,
Pat

Hi my name is Geraldine and i live in the UK near the Gatwick Airport.
Im very new to the health board and im so glad i found it .I dont feel so alone . I think my doc thinks im a fruit case !!!! I dread going to see him now .
I was intrested in what you said about the auto immune diseases I my self have vtiligo which only started when i was 30 Im now 42. also around that time i started to have really bad cycles after numerous test I was told iI had endometriosis both these conditions are auto immune diseases. Im constantly tired i feel rotten most of the time. I had a test for thyroid problems 2 years ago but they camre back negative. Im convinced i hve an under active thyroid and probably have done for a few years. I find the medical profession very frustrating they dont listen to you i believe my conditions are all related. I have now got a limp under my armpit which they say is breast tissue gone up to the armpit. I dont believe that for a second i think its too do with the endometriosis i have as it can travel through your lymph nodes but of course the docs dismiss that fact . Im sorry for dragging on please feel free to reply to me and i promise i wont go on best wishes geraldine xxx

Hi, Geraldine,

I am sorry to hear that you have been feeling so rotten. Yes, it can be extremely frustrating to deal with doctors--especially when one has autoimmune disorders. Symptoms of many a/u disorders often overlap those of other a/u disorders, which, in fairness, can complicate a proper diagnosis--plus, many of these same symptoms can be attributed to "depression" or "stress", and doctors can be reluctant to look any further than "Oh, I see before me a woman in her thirties (or forties) who is presenting with a lot of 'vague' symptoms; she seems depressed, cold be perimenopausal... I'll prescribe an antidepressant and suggest that she exercise more.":mad:

But do not give up!!!:nono: You know your own body best, and if you think something is not right, then keep "pushing" until you get some answers. I know it's hard, but do not feel too intimidated or embarrassed to let your doctors know exactly how you feel. Be specific! Bring in a list of your symptoms that you can give your doctors to put in your file. If possible, provide approximate time frames for when your symptoms first began.

As far as your thyroid testing is concerned, a lot can happen in two years. Insist on repeat testing! You also need to have thyroid antibody testing done (anti TPO and anti-Tg). With your history of a/u disorders, you might have an autoimmune form of hypothyroidism.

Patients with one a/u disorder are typically susceptible to other a/u disorders. Some of these disorders tend to "cluster" with the same disorders. With your history of vitiligo and possible a/u thyroiditis, you should also be tested for diabetes and pernicious anemia. If you'll refer to the "sticky" posted by me at the beginning of this (Immune Disorders) board, you'll find a link to an excellent article describing a complex condition known as Autoimmune Polyglandular Syndrome. Bring a copy of it to your doctors, if necessary. (Are you seeing an endocrinologist? I know it can be difficult to get referrals to specialists in the UK, but I think it would be a good idea for you to try to see one, if you aren't already doing so.)

Geraldine, this is a very old thread, and I don't know how many people are actually reading it anymore. I would suggest that you start your own thread on this board, and describe your history and symptoms for others to comment on.

Good luck, Geraldine.:) I know from experience how frustrating it is to have to push yourself just to get out of bed in the morning, much less to have to "fight" to get proper medical treatment, but, unfortunately, it's what most of us have to do (even in the US!).

Pat

What is an immunologist and how do you find one and what do they study?
Auto immune disorders?

I thought my daughter had tunnel vision and it isn't. It is an awareness problems which is a neurological problem from her Non-Verbal Learning Disorder(Autism spectrum).

I think that an immunologist works less with autoimmune disorders than with immune deficiency disorders; it has been my experience that autoimmune disorders are generally handled by a specialist in the body system most affected by the disorder--be it rheumatological, neurological, endocrinological, gastrointestinal, etc. An immunologist also manages allergic disease and, in fact, is often described as an allergist/immunologist.

Good luck with your daughter.

I'm not really sure if this is the board that I need to post on, but I'm going to give it a shot.

Since January, I've had 5 sinus infections, 6 cases of tonsillitus, 4 bouts of strep throught, and double bacterial pneumonia. I also recently had a tonsillectomy. Last year I took over 25 rounds of antibiotics for various illnesses.

Back in January, I also had a lot of really random symptoms: I had large bruises all over my body, I would cough up blood and get frequent (as in up to five a day) nosebleeds, my lymph nodes were (and still are) visibly swollen. Since I was away at school and had no car, I was only able to see the campus health staff, and they also noted that I had a swollen spleen. I lost 21 pounds in a month, and just became generally unhealthy looking (I had no color in my lips). I had a few blood tests done, but they only said that my liver enzymes were elevated, and there were no other follow-ups. Campus health isn't so reliable.

The coughing up blood has stopped, I still get a few nose bleeds, the bruising has decreased a lot, and I've stopped loosing weight rapidly, but, my lymph nodes are still enlarged and lately I've noticed a lot of joint pain and swelling and a lot of stomache issues.

Anyway, I'm just wondering if anyone has any ideas about what could be causing any of this.

I'm so sorry about the rough time you've had this past year. Certainly, it's a relief that some of your symptoms have subsided, but you are still clearly unwell.

Are you home from school right now? If so, this would be a good time to have a thorough work-up to see what is going on with you. Do you have a primary care doctor? I would make an appt. asap to see him or her, who can begin to run some preliminary tests. In light of your recent joint pain, I would imagine that you'll need to see a rheumatologist--who would be able to run tests for a number of autoimmune disorders. (Maybe you should book that appt. now, since it can take a month or two to see some specialists, if it's your first visit.)

This thread is very old, and I doubt that most of the "regulars" on this (Immune Disorders) board are reading it anymore. I would recommend that you start a new thread on this same board, summarizing your history as you did here, and I'm sure you'll get more responses.

Good luck, and please keep us posted.

Best,
Pat

I'm new to this message board thing, I'm not sure how I should start a new thread...

Help would be much appreciated.

I see you figured out how to start a new thread! :bouncing: You'll have to allow for the board being a little slow, because the holiday weekend is coming up. (Most message boards tend to be less active during the summer, anyway.) If you don't get any responses by Tuesday, I'll "bump" you up, so your thread will move back up to the top of the list.

Aunt Pat talking here: Make that doctor's appt. before the weekend, o.k.? :)

Best,
Pat

My posts weren't old at all, so why did you disable the thread? I was still waiting for some responses about an immunologist and auto immune disorders.

Shababy~

This thread hasn't been disabled at all. People can still read and reply to messages posted in the thread, just as you did and I have.

What I had suggested to Collegekid19 was that she start a new thread explaining all of her varied symptoms, in the hopes that more people will see it and respond to it. I should have suggested the same thing to you.

What I meant when I wrote to Collegekid19 about the thread being "old" was not a reference to the most recent posts but to the fact that the first post on the thread is over a year old, and I suspect that most of the "old-timers" on the board have stopped reading the thread, perhaps assuming that nothing "new" was being posted. You'll note that I was the only person to respond to your first post; I receive e-mail notification from HealthBoards whenever a new post has been added to a thread I have either started or have posted in, which is how I was even aware of your (and Collegekid19's) posts.

I know how desperate you are to find answers to your daughter's problems. Both my cousin and a close friend have sons who suffer from autism, and I am sensitive to the many frustrating and complex manifestations of the disorder.

As I suggested above, perhaps you start a new thread, as Collegekid19 has done. You might want to add why you think that some your daughter's symptoms might be immunologically based.

Pat

Pat,

Thanks so much for all your advice. The new thread is doing alright, but, not as many results as I'd hope. However, I think that you'd be pleased to know that I have a doctor's appointment on July 11th. Now if only I knew how to tell him what to look for. I know that it seems kind of crazy, me telling a doctor what to look for, but, I'm in a small town and feel like this could possibly be something a little bigger than he's used to looking into.

Once again, thank you.

I am so very happy that you made an appt. with your doctor! :)

Your symptoms were/are certainly all over the place. I think that ultimately you'll need to see several specialists--a rheumatologist, as I already mentioned; a gastroenterologist (for the elevated liver enzymes and stomach problems); an ear-nose-throat specialist (for the frequent sinus infections and bouts of tonsillitis); and maybe a hematologist (for the nosebleeds and easy bruising) and/or an allergist/immunologist (to address a possible immune deficiency). :dizzy:

Yep, it can be awkward "guiding" your doctor in the diagnostic process, but we've all had to do it. :eek: Perhaps your best bet for the upcoming visit would be to acknowledge to him that you are presenting him with "quite a challenge", but that you would appreciate it if he could "run a few preliminary blood tests" and then refer you to any specialist(s) he thinks necessary. (If your ins. plan doesn't require a referral to a specialist, you can always go on your own to one or more, but it would still be best to get the initial bloodwork taken care of by your PCP beforehand. After the results are in, make sure you request a copy of the report, so that you can take it with you to any other doctor(s) you might see.)

I realize that it might be difficult for you to see specialists if you are living in a small town. Another thought that has occurred to me is that you could wait until you go back to school (larger city, I hope?) and see specialists out there, if you have access to a car on campus, or at least good public transportation. A teaching hospital, if you have one nearby your own school, might be your best bet, because you'll find doctors in just about every specialty in one place, and they can coordinate your care.

I'll be very anxious to hear how you make out on the 11th. You might as well post your "report" on the new thread, to keep it alive.

Best,
Pat

How can I move my posts to a new thread?

Shababy~

Go to the main page of the Immune Disorders forum, where all the threads are listed. Way at the top of the page, on the left-hand side, is a blue New Thread button. Just click on it, and type your message, which will become the first post in the thread. (Don't forget to give your thread a title.) You can also copy-and-paste info you've already included in your first post in this thread into the message box.

I hope you get some helpful suggestions. (Remember to be more specific, if you can, about why you think your daughter's symptoms might be immunologically-based.)

Good luck,

Pat

hey, I just had to write when i read your symptoms and problems. I also have hypothyroidism, hashimotos and also have been told i have fibromyalgia. I am stuck as you, on who to go to next. I have also had severe problems with gerd and am being sent to another specialist for this condition. Does it ever get better? It seems once I was diagnoised with the immune disease, I am falling apart. I also just found out I have degenertive disk disease and am in constant pain with it. What do we do to make these doctors understand we are not just making all this up? I feel like I am around 70 and I am only turning 40 next wk. Are any of you getting disability or have u applied for it? I have been out of wk since Dec and had to quit my job which i liked due to all my health problems. Best wishes to each of you and please keep me informed and any suggestions you might have...

I hear you, CarolinNC. It is so frustrating to be dealing with one new set of symptoms after another, seeing at least a dozen different doctors before finding one who will diagnose just one condition. I had one neurologist tell me at my first (and only) visit to him, before he even examined me, while he was reading my "new patient" forms, that I needed to see a psychiatrist.

And to top it all off, many of us have to deal with skeptical family members. My marriage of 25 years is in name only. The toll of dealing with me being so sick and tired for so many years without having had any diagnoses finally got to my husband. And once the diagnoses finally came in, he dismissed them as not being that "serious". We had a huge argument just last night in which he told me that "fibromyalgia" was a synonym for "hypochondria", on the basis of a friend's wife's doctor telling the friend that fibromyalgia is what doctors diagnose patients with when "there is nothing wrong with them." He refuses to read any literature on any of my conditions, even though he is extremely medically illiterate (by choice). Perhaps my conditions, taken in isolation, are not that serious, but combined, they make me feel as if I have been hit by a truck on a daily basis.

I don't think it's a coincidence that you are almost 40. I'll be turning 50 next month, and it has been about 14 years since I started "doctor shopping" (as my husband calls it). I think that the mid-30's to early 40's is a fairly typical age range for women to begin to develop symptoms of a/u disorders. Once I was finally diagnosed with Hashimoto's hypothyroidism, I was diagnosed with myasthenia gravis and vitiligo, also a/u disorders, within the space of about six months. (Before then, I was diagnosed with depression, anxiety, fibro, mitral valve prolapse, GERD, IBS, asthma, migraines, and osteoporosis.) I really think that dwindling female hormones play a role in the development of many of these conditions at mid-life, although I believe that most researchers think that the abundance of these hormones make women more susceptible to at least some of the conditions--namely, fibro, MVP, IBS, and migraines.

In the meantime, the most we can really do, as far as I've been able to determine, is to do as much research as we can, seek the opinions of specialists in as many fields as we need to (and get second, third, or more, opinions, if necessary). We do know our bodies best, and we deserve to be treated with respect by those whom we are paying for their time.

Good luck to you at your appt. with the back doctor next week, and with the gastroenterologist. Please keep us posted.

Best,
Pat

P.S. I'm sorry I can't help you with the disability question. I had been a stay-at-home mom when I first got sick, and was never well enough to reenter the work force.

Hey Pat,

Just wanted to let you know that I saw a doctor. I have to have an MRI because of significant hearing loss in my left ear. They think I could possibly have a growth on my auditory nerve. However, I still got no explanations on my other symptoms though. Now I just have the added stress of not being able to hear anything under 60 decibles in my left ear and the impending MRI.

Anyway, I just wanted to check in with you and let you know how I was doing.

- Collegekid

Collegekid,

Thanks for reporting back on your doctor's visit. I am so sorry to hear about your hearing loss. Will be keeping my fingers crossed that it isn't anything serious.

Did the doctor at least order blood work to rule out/diagnose causes for your other problems? What did he say about your sad list of symptoms, past and present? If he basically blew you off, then I would try to see a rheumatologist, either now, or when you go back to school in the fall, if you think you might have access to better health care there.

I understand that the impending MRI and what it might show is going to be occupying much of your mind right now, but you still need to get some answers about the rest of your problems, so please humor old Pat here and promise me that you will indeed follow up with a specialist.

Good luck with the MRI. I'll be anxious to hear how you make out.

(((Hugs))),
Pat

Pat,

Well, I had my MRI, and now it's just time to wait on the results. The doctor that I saw this time was an ENT, so he's just focusing on my hearing problem. Well, first he took out my tonsils and now he's focusing on my hearing loss. I'm just tired of going from one problem to the next. I'm fairly certain that my parents are getting tired of it as well, I think that I'm slowly sending them into financial ruin. Now not only do we have the masses of bills from all of my sickness this past year, but a tonsillectomy, an MRI, and soon, a hearing aid. I'm just tired of being sick. I just want them to find out what's causing all of this stuff to happen. Is there any way that it could all be related? What do I do to find a doctor that will look at all of it, and not just the specifics?

I guess that tonight I'm just tired of being unhealthy. Thanks for listening and thanks for the hug...

- Ashley

My sister has had Myasenthia Gravis for almost 50 years. I have hypothyroidism and high cholesterol for the last few years when the periods started stopping. My son has vitiligo for the last 20 years. They thought the MG and the vitiligo might be related but then we found a distant Uncle on my husbands side of the family that has vitiligo. So we aren't sure where it came from now. :confused:

Pat,

I am currently in the same boat as you, I have antimicrosomal antibdies and Grave's opthalmopathy, but not true Grave's disease, the antibodies attacked the proteins in my occular muscles causing them to swell. I have a slew of weird symptoms, and have seen a bunch of specialist. My endo is a Prof. at (I'll say it ) OSU med center in Columbus Ohio and all she ever says is "your thyroid is fine" I KNOW THAT. She has been no help. I was finally referred to immunology..... accidently in the infectious disease part......but that Dr. was GREAT!!!! He took time to listen to the symptoms and read lab results and promised to get me set up with the correct type of immunologist.....finally after 6 mos. of misery and being off work I see the correct Dr. at OSU on Aug. 18, I cannot wait. It is miserable to be bounced from wrong Dr. to wrong Dr. each saying "I'm not really the right Dr. for this type of autoantibdy problem" UGH!!! Does anybody feeellll my pain, lol! :D Please post what happens with your treatment.... thank you . You have inspired me to email down to OSU to them, before my appt., just in case.

Soma