I am getting so frustrated and depressed over my lack of diagnosis--not just a lack of diagnosis with MS but a lack of diagnosis of anything. My quality of life is going down, down, down, and yet doctors keep saying it's depression, or they say nothing at all! The psychiatrist, who studied psychiatry specifically and treats psychiatric patients [I]every single day[I] says there is nothing psyche going on, yet the doctors who do not specialize in psychiatry are so quick to just say "oh yeah, depression."
Anyway, the point of this is that I am so desperate to prove something is wrong that I am putting together a file of all my research, lists of symptoms, a diary of what goes on daily, etc.
Well I took a warm bath yesterday hoping it would relax me. Had my lavendar bath beads, my little bath pillow and a good book. As soon as I got in I knew something was wrong. My legs felt like lead after about two minutes. They were so heavy I could barely stand up. When I did stand up good thing I was holding on to a towel bar because immediately my vision went all gray and fuzzy and I felt like I might pass out. My arms have been so weak since then. I wanted to post this last night but my arms were too tired and I could not type much because it was too much energy to stretch my fingers far enough to hit all the keys. I know that must sound crazy. I am still wiped out and feel "heavy" like I'm stuffed full of lead.
I know that long ago they used the hot bath method to test for MS. I guess subconsciously I thought taking a bath was like "fine, if there's nothing wrong with me I must be able to do this." Does this bath experience strike a cord with anyone, or was it just simply a coincidence that I got overheated (even though it was not an especially hot bath). I'm open to the possibility of coincidence, but my life seems to be a series of "coincidences" lately and I'm getting so frustrated. I see a new primary physician this week and I'd like to be able to recount this story and not have it be dismissed like everything else I say is. It just seems like if I really were just depressed I should be able to take a warm bath without almost passing out. Also, I was only in the tub for about three to five minutes before I couldn't take it anymore.
Oh You poor baby. First of all, YOURE NOT CRAZY and you havent been "here" long enough to have heard the hot/warm bath/ shower HORROR stories!! No, that wasnt a coincidence....you truly sent your myelin into overdrive..Myelin is what protects the nerves, and what is attacked by MS. Heat is a HUGE trigger in MS patients. It doesnt have to be "so hot", only warmer than the conditions you started in. SO, if you were in a comfortable 70 degrees in your home, and got into a mere 74 degree bath, you did it. The good news is you didnt do any permanent damage. Heat reactions usually reverse themselves as soon as the body temp cools down to normal...however, when it happens, BOY does it happen! One of my first experiences, before I was dx was taking a hot shower on a summer day- getting out, into airconditioned 68 degree house and then starting to blow dry my hair...my body went from cold, to hot to cold to having heat blown at my very long hair...within seconds I was on the ground, dizzy, shaking, crying, not having a clue what the heck was happening to me...my husband made me "lie down" on the bed....but within seconds, I was back in the shower, trying to wash the cold sweat off of me! It wasnt until almost a year later, when my Neuro's nurse was taking my history that I remembered that epsiode. This is why all of us "veterns" tell you to PLEASE keep notes of everything....this is a perfect example of how you want to tell the story when they ask you about heat sensitivity. And, they will...
Now, you said you see a new physician this week...always a thrill, huh? Feel like your whole world is revolving around doctors appointments yet? It gets like that sometimes....This new doc is another primary? Why not a MS doc? Or, A Neuro? Does your insurance demand that you get a referral for a Neuro? IF not, please look into scheduling an appt with one, and when you call- ask if they see MS patients. Tell them you have many MS symptoms and feel you should get an opinion from someone who treats MS regularly...if your insurance DEMANDS that you get a referral from a primary, then talk to the primary about the fact that YOU WANT to be seen by a neuro. Especially if he or she orders an MRI, which might happen. You have every right to have a Neuro read those results and see you.
Desperate, please dont be "desperate". I can tell you arent crazy. You make perfect sense, your sentences are completely lucid and clear~ even your fear is 100% rational. Not to mention your frustration. Look back over MONTHS of threads on this board and see how normal you are. Everyone who has ever gone thru the long DX journey feels like this at some point. Remember though, its necessary to rule out everything else before you can be give a dx..its takes time. I hate that for you, especially since I got a relatively quick DX, but in your case, too many things are happening which no one is willing to commit to a dx overnight. You cant blame them. What if they treated you for the wrong thing??
The one piece of advice I can give you is this: TRY as hard as you can to focus on what is positive....stress, exhuastion and mostly fear can trigger things which will make you feel worse. All 3 are your worst enemies. You really have to find ONE thing to do which relaxes you , makes you smile, or gives you hope. Pet the cat? Brush the dog? Call an old friend who you dont talk to enough? Keep typing away your frustrations here....and if typing is a problem, look into voice recognition. I used it for quite awhile at one point. It works! Find a local support group where you can make actual, instead of virtual friends, people you can actually call when you need them...I found that both types helped me. The people here literally saved my life at the beginning of my journey with MS, however having actual people to see and hug, made it possible for me to have a place to vent where I got automatic understanding. I became quite close with a few people lin my support group, all of which I see once a month. I talk to "you all" so much more often!
Forget the psychiatrist for now, and forget the doc who told you it was in your head. Right now, you need to look for a doctor who wont dismiss your symtoms and one who truly understands neurological diseses. Whether or not it is MS, time will tell, but you have something neurological going on! In the meantime, while waiting to find out, dont be your own worst enemy. Keep in mind that so many of us have been where you are and are doing so much better now. Keep in mind that even if it is MS, heck- if we can handle it, you can! If one has to have MS, this is the time to have it..the meds DO work at keeping things at bay...and trust me, once you get on them and take some control over your illness, you start to relax again. Life will get back some sense of control and normality...its just going to be a bumpy ride until that happens.....believe in yourself, believe in us. We all know what you are talking about both in your head and with your symtoms! A doctor out there will listen to you and get things rolling for you. You have to be persistent enough to find him.
Hugs to you..
Hi, desperate. I looked at a few of your old posts to get a better idea of what's going on and it's hard to tell from what you've posted. I think in one of your posts you said something about going to see another specialist this month -- is that still happening?
I think most everyone here would agree that not knowing is worse than anything. One of the problems is certainly that your doctors have been pretty dismissive! I know that finding a doctor who gives you the feeling of "We'll get to the bottom of this" is much easier said than done -- but you have to get someone who will listen to you and guide you through through this. I think it's very wise that you are hitting the "rewind" button and going back to a new primary care doctor. That's when things really changed for me -- I am lucky to have a good one who listens and cares and hope this new one will be that for you. Your situation is additionally confusing if you have a doctor who thinks you're depressed but won't put you on anti-depressants! Depression can cause some of the things you've posted below. In general, the mind is very powerful and symptoms, even if they're psychosomatically caused, ARE very real.
Can you repost some of your symptoms and also what you're taking to see if someone can shed some light? (I'm a big believer in alternative medicine but as with traditional meds, you have to be careful there as well.)
Nikki and Beary, thanks for your thoughtful responses. Nikki, I always identify so much with you. Thinking back, I've had a few "shower episodes" in the past where I've been dizzy, shaking and then cold sweat. My then fiancee (now my husband) always thought maybe my blood pressure was doing something funky, or I checked the calendar and chalked it up to pms or whatever. Always trying to find a "reason" for all the weirdness.
Beary, I did end up seeing a specialist, but it turned out the neurologist who referred me referred me for suspected chronic fatigue syndrome. The "specialist" (affiliated with an Ivy league university no less) turned out not to be a CFS specialist (the neuro was mistaken) and proceded to tell me I am clinically depressed and need to get on ADs stat. It was devestating.
Here's a brief history. I started seeking answers about 3 years or so ago.
Thought it might be thyroid since it runs in my family. I was experiencing extreme fatigue, muscle weakness, dizziness and having issues with word recall, using wrong words, forgetting things. All out of the blue--I was very active, healthy, used to run every single day. One day in 2004 on a trip with my girlfriends I fell twice in one night. My legs just went out from under me. For the next few months I experienced all the symptoms more severely. I'd be falling asleep at work, had tremors in my right arm from time to time, very weak muscles, etc. Had a complete work up by an endocrinologist and he found my thyroid was fine. 3 more doctors then said "I don't know" or suggested depression and I got so upset and defeated, I didn't go to a doctor again until Dec 2006. I just "managed" for over two years.
In Dec I realized I couldn't "Just manage" anymore. My symptoms are so many, I probably sound like a whining, weak pain in the butt! My cognitive issues are the worst. I feel like I can't have an intelligent conversation. I forget things, like I'll meet someone at noon and by 4pm if I run into them again I don't remember meeting them. My concentration is shot. I am often dizzy. Can't use stairs anymore. Depth perception is awful, plus the dizziness and I'm always afraid I'll fall. muscles are almost ALWAYS really weak. My legs and upper arms especially feel heavy all the time. I have unexplained shin splint type pain all the time. My feet burn--this is fairly new, but it's getting worse and worse. A few months ago I had tremors (my psychiatrist witnessed them once), and I recently experienced a weird buzzing/vibrating in one spot on my shin. I'm fatigued--not tired like I need a nap, but bone-tired, dragging fatigue.
I could go on but I'll spare you! I had an MRI in January. My doc ordered it with and w/out contrast but the woman who did the MRI told me she "didn't see anything that warranted doing it with contrast." The results were "unremarkable," which is good but still provided me no answers. I got tested for Lyme, B12 deficiency (it was normal, in the 400 range), TSH, etc. I have copies of all my test results in a file. On paper I apparently appear healthy as a horse. The only thing that turned up was the presence at some point of Epstein-Barr virus. Saw a neuro in Feb who suggested chronic fatigue. The neuro said based on my MRI results and some tests he did in his office (had me walk a straight line, touch his finger and then my nose, do three deep knee bends, etc) he did not think I had any neurological probs. (Later my primary told me his specialty is migranes). Oh, and the neuro also ordered a chest xray and I still have not been able to find out why, but it was also normal.
I am very open to the idea that this is not MS, but it is something. I know it is. I know my mind and I know my body and I just want my life back. The reason my psychiatrist will not give me ADs is becuase in order to prescribe them she has to actually diagnose me with depression and her fear is that giving me that diagnosis will give all the other doctors a reason to not find the real problem. She keeps encouraging me to research and ask questions and push to find out what this is. (She still thinks Lyme is a possibility since the test results can be false negative and I live in an area in the Northeast where it is more prevelant) I admit I am experiencing some depression because of the lack of knowing what's going on with me, but mostly I am frustrated and sometimes a bit angry, not so much depressed. And scared, of course. I've posted a lot on this board and on the CFS and Fibro boards, and it's so nice to have folks who listen and sometimes even have shared experiences because at least I feel like I am not crazy! I have to say that right now I am starting to feel too weak and tired to go on trying to get answers though. I'm trying all kinds of regimines. I've done supplements like NADH for six months with little benefit, and right now I've turned to bee pollen and I'm going to give that a go for a while and see if it helps.
A million thanks to both of you for responding. I really truly do appreciate it!!!!
I'm hypothyroid (Hashimoto's) so I can identify with that and give you some feedback on that. First, I've never heard burning, pain or buzzing but the other symptoms can present themselves in hypothyroidism. (Don't know if they suspected hypo or hyper -- I'm familiar with some symptoms of hyper but not all). As far as your TSH, that only shows you how hard your thyroid is working. That is actually how I was diagnosed but it is the RELATIONSHIP between that and other functions like T3 and T4 that's most important. You said initially they did a comprehensive work-up but I'm unsure as to whether the next time they did only TSH or everything... TSH levels alone will NOT always indicate the presence of a thyroid problem.
Re: MRIs, I'm fairly new to this but I've never heard of getting something done without contrast and then deciding whether or not to do it WITH contrast -- and leaving that up to the radiologist! I'm a little stumped by that one. Only thing I can think of is that the radiologist saw no lesions when the test began and that's what the neuro instructed? What does "unremarkable" mean -- no lesions? Was it a brain MRI or also spine? Quite honestly, still a little strange to me but perhaps someone will have more to offer on this.
When I was diagnosed with EBV many years ago the doctor recommended that I take NADH. To be honest, like you, I never felt a tangible benefit. I also think you're very wise to get off the bee pollen right now. On the supplement route, think "anti-inflammatory" as key instead of focusing on the immune system. Again, lots of info. out there on this in terms of supplements and also nutrition.
Regardless, this doesn't take place of a real diagnosis -- and recognizing that there IS something to diagnose! Info. out there pretty much across the board supports that symptoms often get worse during PMS so you're not crazy on that one -- but it doesn't mean it IS only PMS either! What your psychiatrist said is also a bit confusing -- lots of people with other issues/diseases are given anti-depressants. I'd definitely put that on the list of questions and symptoms you're going to bring to the new primary care doctor.
Hope everything works out for you and that the new doctor gives you the help you're looking for!
Hi Desperate- I cannot add too much to what Nikki and Beary have said but I wanted you to know I am thinking of you and am very familiar with your story. My symptoms are very similar to yours (including the carzy at times feeling) and do not have a dx. I too feel like a crazy hypochondriac when I tell doctors about what is going on- too many things but all nerological. I was very interested in your history with regards to being so healthy you ran every day and the office coordination tests they do (that you passed).
I have the same problem- look to be extremely healthy on paper and on office coordination tests. All MRIs, etc come back negative. The only thing visible to anyone in a short office visit is hyper-reflexivity. I am wondering if being very healthy when this hits makes it harder to diagnose. I swam 3x week, have a history of Ballet and I do Yoga. I have no problem standing in mountain pose (straight up, feet together) but I cannot put my pants on and if I trip over the kids shoes, it takes me a while to get my balance back! LOL. I too have to hold onto the walls in the shower. I can no longer swim or climb stairs but I am still doing yoga. It does not demand much energy and lets gravity do the work for you and I feel like I am working to improve my balance. I have cut my hours back at work which seems to help with the cognitive issues- I think they get worse the more tired I am.
My last neuro gave up on me when I could not walk for a while and he told my Primary that it must be psychosomatic. My primary did not agree (and neither does my psych) so I am waiting for an appt with a new neuro in June in Boston that has the reputation for solving the hard cases. Like you, I do not care what it turns out to be, I just want to know so I can begin doing something about it!
You are in my thoughts and best of luck with your doctor appt this week. Please let us know how it goes.
Desperate, what state are you in? I live 20 minutes from an Ivy League College in New Jersey...yes, Princeton. I was just wondering if you are at all close to the NJ/ NY area..I could give you the names of several good docs...more than likely youre at another Ivy league area in the NorthEast though....lol.
Let me know if you want names.
Meanwhile, you are not crazy...and your doc is being smart not labeling you with Depression. Rght now, You need to find a Neuro who specializes in MS...reason being, MS docs and Neuros who Know MS really do rule out everything else....and a good Neuro will also be able to see what it is, if it isnt....keep looking for one and please, PLEASE know we are here if you need us....
keep us posted.
Thanks Beary! To be honest, the MRI thing stumped me too. My primary ordered it with and w/o. The radiologist decided not to do it with. Then my primary transfered to a new office in the network and to get the results I saw another primary who didn't think there was a reason to go back and do it with contrast. (Then that primary said maybe fibromyalgia and referred me to a rheumatologist. I got an appt 3 months out, and then the rheum's office called and cancelled it because the rheum couldn't be in that day and they rescheduled for another 2 months, so I have yet to see him) It was brain only. I assume unremarkable just means nothing out of the ordinary. The report just said "no evidence of stroke or tumor, unremarkable." No one sees a reason to do a spine MRI.
I think what they initially thought the thryoid thing might be was Hashimoto's disease, and to be honest I feel I have ALOT of the symptoms. But after the full workup, they said it's not. This time around they only did TSH, even though I've said repeatedly that I feel like it's Hashi's and that my family hasa big history of thyroid problems--They keep saying no, it's not thyroid, but I suppose I will definitely ask the new doc to do the T3 and T4 also.
I don't know why the psych is SO extremely against prescribing anti-depressants but she has strongly advised against it the last two times I saw her. She's the one who suggested I research MS initially. She's seen me with tremors and all that and thinks it's a possibility. My gyn suggested it also. She has several MS patients and printed out some info for me at one point.
I suppose I should find a neuro who specializes in it if I can, as opposed to the last neuro who primarily works with migraine and headache cases. I have a fear of being too demanding with the tests, etc, because if they already think I'm neurotic I might sound even more so. It's really a sad commentary on the state of health care if you ask me, but also partially my fault for not having the guts to be a really strong advocate for myself.
ADVOCATE for yourself. No one else will...although we will be glad to virtually kick you in the butt if necessary! Find that doctor...MS Specialist or just a good Neuro who has alot of MS patients and knows what he is doing.....it will make a difference. Not to say it IS MS, but those docs are so used to ruling out other things that if something else is to be found...well, they are the people to find it.
I can only pray it isnt MS..but at the same time cannot honestly tell you that MS is the end of the world. It isnt....and this is 1/2 hour after taking a shot!!! Its all going to be okay....hang tough. ok?
Hi Nikki and Zandvoort,
Gosh I almost missed your replies. I must have been typing my response to Beary at the same time and mine got posted after so I missed your.
Nikki--you always have great things to say! I really appreciate the offer to give me some names, but I'm in New England. (Zandvoort, I woudl LOVE to know the name of the neuro you're seeing in Boston!)
Zandvoort--I'm so sorry to hear that you sound so much like me, but I'm so glad you're getting to see someone who might help you. Like you I did ballet (for years--LOVED it) and I ran, did kick-boxing, etc. I was so active. Then that day came where I fell and it's been downhill from there. I suppose I probably was slowing down a bit before that, but that's the day I pinpoint as the start of my troubles. I have fallen a few times since then too. The "in office" test the neuro gave me consisted of only four things. He had me walk a straight line and I swerved a bit but made it. He had me touch his finger then my nose with each hand. That was fine. Then he had me do three deep knee bends. Fine, but my thighs burned for a full day after. (only three!) And then he checked my reflexes. In my primary's office I had a complete absense of a patella reflex, but when he did it I kicked out pretty far--I think that's the hyper reflex? He said everything I did was completely normal. Then he said I probably have chronic fatigue and need to find a specialist to give me some stimulants.
It's so confusing. Some folks with MS say I sound just like them and others say no. Some folks with CFS say I sound just like them and others say no. Some folks with Hashimoto's say I sound just like them and others...see a pattern here?
Definate pattern. Its the way of the dx rollercoaster. Ready to get off yet?? I joke, but I know its not funny. Wish I could give you the name of my docs, but please, get them from Z. Just get a good referral and take it from there..
as far as the tests you were given, thats a start, but there are so many more Neurological tests out there...you'll start seeing a good pattern when you find a good doctor. And, they do exist. Promise. Just keep up the chin and push onward...
The RADIOLOGIST decided on their own not to do it? Am I in another universe here? Question -- did you have an IV inserted before you went in the tube? And just FYI, make sure that "seeing no reason to do it again" isn't "lazy-speak" for not wanting to deal with your insurance company! They often have do a little dance with insurance for additional MRIs. Again, does "unremarkable" mean NO LESIONS? From what I understand, lesions can be just on the c-spine and not appear on the brain. (I'm sure someone will correct me if I'm wrong on this.) Oh, I hate your rheumatologist too! ANOTHER 2 months? UGH.
Re: thyroid, the new doctor should KNOW to do the full work-up -- and so should have the old one! That's truly absurd. Levels can change for all sorts of reasons and without a real timetable! I have NEVER heard of such a thing. I'm now going to my endo 2 times a year just because I fluctuated last year. The fact that there's Hashimoto's in your family should be reason enough to do this blood work ANNUALLY as a matter of course!
No, I don't get the psychiatrist. Makes no sense to me. If she truly suspects that your physical symptoms are NOT due to depression, wouldn't that be all the more reason TO prescribe them so that if they didn't disappear your other doctors would know that it wasn't due to that?
Okay, now that I've firmly established that I'm mad at your present doctors, I again reiterate that I hope this new primary care doctor is one who will LISTEN to you and can be your "team leader". Please tell them everything and if they DON'T listen, find another one! Honest, I've said this before -- it can be such a great place to start. I tried this on my own and was freaked. Never even thought of calling my primary care physician but I did on a fluke (only to get valium to help me with the MRI ) and that is when EVERYTHING changed for me.
Good luck and please keep us posted on this mystery!
Thanks you guys, it's really great to get some good feedback here!
Beary--yes, it seems from what the radiologist said that she decided on her own to do it just w/o contrast. They didn't insert any IV or anything. The whole thing took about 5 minutes. Seemed odd to me too. I read the request from my primary myself and it clearly said she ordered both with and with out. Like I said, I never saw that primary again because she transferred. I saw the neuro after the MRI and asked him why it was only done with and he said it was nothing to be concerned about.
Nuffs, I had to laugh when you said you felt like a lab rat. That's how I feel sometimes! I've had more blood drawn this year than in my whole life I think.
Well, now I have a long list of questions to ask my new primary and hopefully she will listen and, more importantly, respond!
Okay, even more weird -- or at least I think it is and this is why I asked. I've only had one MRI with/without contrast and they inserted the IV BEFORE they put me in the machine. Then the nurse comes halfway through and pushes it to insert the dye but it's set up ALREADY.
Question to the veterans -- has anyone had this differently, where the IV isn't inserted beforehand? desperate, depending on the answer we get here, we might be finding out whether or not your radiologist was just plain lazy. How could she possibly know BEFORE you went into the machine whether or not the findings would be "contrast worthy"?
Wondering if this is really another standard way to do a with/without contrast MRI, to insert the IV midway or if it should always be at the beginning...