Discussions By Condition: I cannot get a diagnosis.

Fms? Ms?

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: aenigmazaephyr
  • July 10, 2009
  • 02:26 AM

I am a 28 year old female living with fibromyalgia for a year. I've had symptoms since my teens. However, the past 5 yeas or so have seen a huge decline in my health. Narcotics are the only thing that brought relief but that may be only because I'm too busy on cloud 9 to care. I had horrid reactions to cymbalta. Lyrica terrifies me, I won't try it...side effect ***l just like cymbalta and I am not risking it. The docs don't want me on a life long course of narcotics and nothing else helps. I have tried a low dose SSRI, cyclobenzaprine and a slew of various anti-inflammatory drugs to no avail.. My original symptoms:

Severe pains all over, very mild occasional brain fogs, vulvodynia, eczema, migraines, fatigue, feeling heavy, no stamina and just feeling generally blah. Exercise is really bad, though encouraged for fibro. If I exert any energy or hurt myself even mildly I pay for it, for days sometimes weeks. I was once very active and healthy though I did have occasional aches and pains. Not so much anymore...though I do have better periods from time to time.

I've had new symptoms that don't really seem to add up. However, I lost my job due to health problems. I lost my insurance. I finally got into the free clinic. While better than nothing, I don't feel I'm being taken seriously.

My left outer thigh has been numb for over a year. Not like perepheral neuropathy, it doesn't come and go, it's like constant dead weight. They only time I get any feeling back its in the form of dulled, muted but intense pins and needles type pain that lasts for a few minutes and goes away. These incidents happen about once a month. Other than that it's like having a block of wood for a leg, though from the knee down I have normal sensation.

I have developed trigeminal neuralgia. I have it from the nose down, on both sides. Dual sided TN is rare but it does happen and nothing else really describes the electro shock nerve torture in my jaw and teeth. The doctors in the ER, who I have seen 4 times for this ***l are certain it is TN but the doc at the free clinic does not believe it is possible AT ALL EVER for it to be in both sides. My own research has turned up otherwise - rare, but possible. He tried to push it off as a sinus infection even though it was sent into remission by neurontin and I have and no antibiotics since the diagnosis....

At the same time I developed the TN I also developed *severe*pains in both hands. Its progressively worsening and has held me in its grip for two months. Now I can't hold a coffee cup it hurts so bad. My wrists are fine though, its only in the fingers. Extreme constant pain, no numbness. It doesn't sound like carpal tunnel.

I had an MRI of my brain and lots of blood tests. I got my results today. Blood tests look mostly normal. I have no rhumatoid factor, inflammation scale from 0-20 for me is currently a 5. The tests for lupus and scleroderma are fine. I had a few random "red flags" on some things but my doc said not to worry, they were all only tiny bits out of normal range and all seemed to be on the good side of the range instead of the bad.

Here's the kicker, though... the MRI results sent to clinic says I have "2 small white matter foci, once in the right frontal lobe and once in the right temporal lobe. These are of doubtful significance." Impression states "no significant abnormalities". The clinic doc took this as hard fact and has now thrown all possibilities of MS out the window. Sure, it *could* be nothing but I am disappointed and angry. Is it possible this is a first sign, that it does mean something? I don't expect an instant diagnosis but there was no concern shown at all, no further tests, nothing. I pretty much left the visit with a pat on the head and a bottle of fioricet. What should I do? My resources are very limited. If its not MS, great! But I feel let down that a hint of something larger was thrown in the trash. Is it FMS? MS? Both?

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