It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Immune Disorders Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 05-26-2004, 09:28 PM   #1
Veteran
(female)
 
Join Date: May 2004
Location: New Jersey
Posts: 329
PatNJ HB User
Question Should I see an immunologist, and how do I find one?

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

 
Sponsors Lightbulb
   
Old 05-30-2004, 07:29 AM   #2
Senior Member
 
Join Date: Nov 2003
Posts: 148
Hewie HB User
Re: Should I see an immunologist, and how do I find one?

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

 
Old 05-30-2004, 02:31 PM   #3
Senior Veteran
 
Join Date: Oct 2003
Location: USA
Posts: 838
californiasunflower HB User
Re: Should I see an immunologist, and how do I find one?

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

 
Old 05-31-2004, 11:13 AM   #4
Veteran
(female)
 
Join Date: May 2004
Location: New Jersey
Posts: 329
PatNJ HB User
Smile Thank you, Linda. You are a doll!

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.

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?"

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!! Along with everything else, it's all in my head....

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!

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

 
Old 05-31-2004, 05:47 PM   #5
Senior Member
 
Join Date: Nov 2003
Posts: 148
Hewie HB User
Re: Should I see an immunologist, and how do I find one?

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... 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..>! 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....?

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...??!! 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...?


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

 
Old 06-05-2004, 09:38 AM   #6
Junior Member
 
Join Date: Jun 2004
Posts: 15
Jon895 HB User
Re: Should I see an immunologist, and how do I find one?

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

 
Old 06-05-2004, 10:48 AM   #7
Inactive
 
Join Date: Apr 2004
Location: Jacksonville, NC
Posts: 60
catbirdpondlady HB User
Smile Re: Should I see an immunologist, and how do I find one?

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!

 
Old 06-06-2004, 12:10 AM   #8
Senior Veteran
 
Join Date: Oct 2003
Location: USA
Posts: 838
californiasunflower HB User
Re: Should I see an immunologist, and how do I find one?

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! 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!

Last edited by californiasunflower; 06-06-2004 at 12:11 AM.

 
Old 06-06-2004, 11:54 AM   #9
Veteran
(female)
 
Join Date: May 2004
Location: New Jersey
Posts: 329
PatNJ HB User
Unhappy No, we did NOT ask for this!

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 ) -- 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

 
Old 06-06-2004, 12:36 PM   #10
Veteran
(female)
 
Join Date: May 2004
Location: New Jersey
Posts: 329
PatNJ HB User
The MG diagnosis

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

 
Old 06-06-2004, 12:51 PM   #11
Veteran
(female)
 
Join Date: May 2004
Location: New Jersey
Posts: 329
PatNJ HB User
Cool Bon voyage to catbirdpondlady!

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 )

Best,
Pat

 
Old 06-06-2004, 01:18 PM   #12
Veteran
(female)
 
Join Date: May 2004
Location: New Jersey
Posts: 329
PatNJ HB User
Re: Should I see an immunologist, and how do I find one?

Thanks, californiasunflower, for your kind words. I am in the company of some extremely courageous women, and I feel like a Big Baby 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

 
Old 06-06-2004, 02:00 PM   #13
Senior Veteran
 
Join Date: Oct 2003
Location: USA
Posts: 838
californiasunflower HB User
Re: The MG diagnosis

Quote:
Originally Posted by PatNJ
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!

 
Old 06-06-2004, 02:52 PM   #14
Senior Veteran
 
Join Date: Oct 2003
Location: USA
Posts: 838
californiasunflower HB User
Re: Should I see an immunologist, and how do I find one?

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: Itís 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 donít 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 canít 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 Crohnís 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, youíve 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 bodyís 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.

 
Old 06-06-2004, 02:57 PM   #15
Senior Veteran
 
Join Date: Oct 2003
Location: USA
Posts: 838
californiasunflower HB User
Re: Should I see an immunologist, and how do I find one?

Quote:
Originally Posted by PatNJ
Thanks, californiasunflower, for your kind words. I am in the company of some extremely courageous women, and I feel like a Big Baby 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.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Immunologist?? Postie Chronic Fatigue 3 06-22-2008 12:17 PM
What should I expect??? Gavroche2004 Immune Disorders 0 03-22-2008 04:52 PM
any experience with neurontin or immunologist? shabbyanne Fibromyalgia 9 03-25-2007 09:22 PM
Should I get a second opinion? david45249 Sleep Disorders 3 01-02-2007 07:36 AM
Started allergy shots in February... should I be feeling results? carrielynn Allergies 3 06-25-2006 03:39 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



cvidmama (12), kelli1b (4), markincleveland (3), ladybud (3), ltmccarty (2), SK59 (2), AngelicBrat (2), luca689 (2), sugzey$ (1), nannoo (1)

Site Wide Totals

teteri66 (1180), MSJayhawk (1005), Apollo123 (906), Titchou (850), janewhite1 (823), Gabriel (759), ladybud (755), midwest1 (669), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 10:07 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!