Discussions By Condition: I cannot get a diagnosis.

Please Help! Muscle Weakness

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: sondraspalding
  • April 24, 2008
  • 00:34 AM

Hi all. Please forgive me if I ramble on as I am new at this and feeling like I am going insane at the moment from trying to deal with the docs. Back in October I woke up one day with extreme muscle weakness in my legs that got worse as the day went on. For the first couple of weeks the weakness got worse until I could barely walk. I also had what I guess you could call a rash on my chest, shoulders, and neck that looked and felt like sunburn. I was extremely sensitive to touch. The rash isnt as bad and I'm not as sensitive but I still get really red in those areas. I have gotten better at walking but my legs still don't always want to work and I can only walk for short distances before they quit on me. I can barely climb the stairs to go to bed and the fatigue is almost unbearable. I have had to cut back to part time at work partly because of that and partly because I have trouble driving anything but short distances anymore. I have to take breaks if I drive for too long because my legs start shaking. I also have weakness in my shoulder area though it doesn't appear to be as bad (of course I don't use my shoulders as much as my legs.) I have trouble with my memory and sometimes with things like remmebering words. I have had so many tests run it is crazy and most of them have apparently been normal - including MRIs, a ton of labs, chest xrays, thyroid tests, etc. The ones that are abnormal have been my white blood cells (high for the past 5 years), infection scan that found some enlarged lymph nodes and CT scan that confirmed, an immuoglobulin test that showed low IGM and IGA. I have had 3 EMG/NVC tests done (one showed polyneuropathy, one was normal, and the last one said there was nothing wrong with the muscles and nerves but he saw decreased muscle activation.) I have been to so many specialists and they cant seem to agree on anything - most of the time they contradict each other, even in the same field - hence the 3 EMG/NVC tests. I was diagnosed with Fibromyalgia in May which they say this isn't related to and some docs hav even said may have been incorrect. I also started having problems with one of my knees that they just did an MRI on - doctor said that showed arthritis and bone loss due to loss of blood circulation but that it wasn't related. I have had one doctor tell me I should give up and just accept they don't know what is wrong with me but I can't do that. I can accept anything at this point but that we don't know. Right now I barely do anything other that sitting around my house becasue it is so difficult to walk or drive anywhere. Please tell me that someone else knows what I am going through and can hopefully offer some advise. As far as I can tell they have tested for all the usual stuff such as MS. One doc told me I either have an unusual condition or a common one presenting unusually - not a whole lot of help. Sorry to keep rambling but I dont really know what to do anymore - especially with everyone telling me not to get stressed about it because stress seems to make me worse.

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