I had ben having severe joint pain, stiffness and fatigue for a few years (in flares, 3-4 times a year) I was treated as having psoriasis arthritis because basically my rheumatologist could see that I was in pain (in a flare I need a cane to walk) but I didnt have the swelling or fever or blood tests showing rheumatic antibodies. We didnt find any psoriasis plaques but since I reacted well to low dose steroids during a flare we latched onto this diagnosis for lack of a better one. Last year a new symptoms showed up: weakness and shakiness in my legs, stumbling and balance issues. I also was having cognitive problems and my speech was sometimes slightly slurred. This was during a particularly intense joint/stiffness flare. I talked to my rheumy about LUPUS but he ruled that out on the basis of my negative ana results. Things got better. It is still unclear if the neurological things and the joint pain stuff are associated or separate issues.
Last winter I started to get "hot patches" on my skin and my feet felt like they were vibrating. My the fingers on my right hand had been falling asleep on and off for a while and I was concerned. I made a neuro appointment but towards the end of my 4 month wait for an appointment not only did the periodic weakness in my legs increase as well as stumbling but so did the "hot patches". All at once I had nerve pain behind my eyed (like an electric prodder behind my eye, eeek!) and my legs just stopped working properly. It was like there was lead in them. Stiff, heavy logs. I spent a few days unable to walk further than to the bathroom.
To wrap this us, my legs recovered, I had a MRI of my brain, EPT, lumbar puncture (which may or may not have caused 9 days of severe nerve pain and leg spasms in both following the procedure) with results of: congratulations, you are perfectly healthy.
Now my entire right side of my body has been numb and for the past 6 weeks (not completely numb, just reduced feeling and the thumb and two fingers feel "asleep" which extends to my elbow and my toes also right side sometimes up to my knees. Also everything that is "asleep" is also somehow "tight" or perhaps better described as stiff?) Also the leg weakness and shakiness is back (especially left) and get tremors in my left hands on and off. The vibration feeling is now pretty much on and off all day. My GP ordered a cervical MRI (pinched nerve)which came back: everything looks great.
Except I dont feel great. I had even requested an neuro-psychological evaluation because if this was some sort of malingering or hypochondriac thing, then I wanted to know now, before anybody threw that at me. The evaluation was negative (as in: "we dont feel there is an indication of a somatization disorder")
I feel exhausted and I feel frustrated. And the neuro said after my brain MRI "well, thank goodness its not MS" and has completely ruled it out on this basis. I am at a loss; no-one really knows what it is but "it is not MS".
But is it true?? What else could it be?
I dont want MS, but I do want a "real" diagnosis for this whatever it is!
At least I think I do, right now I feel like going to doctors is a complete waste of time and I should just get used things whatever they may be, forget about treatment or medication and get on with it. But sometimes my symptoms are really hard for me to accept (like the weakness which makes me sometimes always need my cane and really limits my activities with my family) Other things I can deal with (like how the shock and worry of burning or wet sensations is now over, though at times painful they are now completely uneventful occurrences to me)
Sorry this is soooooo long, just been a while pent up in my heart for so long and it really feels good to let it go.
If anybody has any suggestions about this, whether of diagnostic or commiserate-ing nature: thanks so much. Just wanna good cry.