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Avatar universal

unusual symptoms..poss MS or other autoimmune

I will try to be as brief as possible.
I am a 40 yr old female who has had no health problems (until now!) I will list my symptoms:
*Oct. 05- woke to a swollen right hand, unable to use, painful. xray, blood work normal.
*Jan 06- woke to a swollen Left hand, unable to use, painful. no xray, no blood work.
*A few months later, can't recall specific date....woke to same problem with my shoulder. can't move it, lift it...x-ray shows mind calcification/tendonitis. Have not had any problems or pain with it since, nor my hands.
*I did experience some "arthritis" like pain in w/ my right middle finger in between the problems with the hand swelling where I had difficulty opening things, grasping things and it was hard to bend the finger.
(did not see a dr about this)
Fall 06-Jan07  On and Off tingling of hands and feet. Especially notice my toes tingling when in the shower. This lasted at least three months. Blood work for thyroid, lyme, lupus, diabetes and B-12 all normal.
Feb 24, 07 Woke to feeling as if I had burned my tongue. By day 3, I had full blown facial numbness, all on the left side, from chin to top of head, including the inner ear and for a few weeks, part of the back of my head. It created some intense itching of my eye at times. Eye evalulation by opthomologist was normal (he was actually the first one who mentioned MS) An MRI revealed one lesion in the cerebellar peduncle. The numbness greatly improved by May.
I still have some tingling in my face, although it is minor it does vary in severity.
Lumbar puncture is normal. All labs are normal.
Since then, I have had an extreme/ violent bout of vertigo. A second MRI showed "improvement".  (it wasn't enhanced anyway....)  I have had a third MRI with a MS specialist and it showed a second lesion...it was not enhanced but it was in the deep left frontal white matter.  My neurological exam was normal, but he did say I had a bit of a hyper relex on one leg.  
I have had other unusual things happen that are strange. When I drive, sometimes I get a sensation that my fingers are huge and that the steering wheel is as small as a piece of spaghetti. It doesn't happen often...couple times a month at the most, but it is so odd.
On my first MRI report it was norted that I had a C5-6 disc protrusion displacing the cervical cord and producing mild spinal stnosis at this level. PRIOR FRACTURE OF THE C5 IS NOT EXCLUDED.
I have never fractured my neck to my knowledge!! ha! I did have a car accident in which I rear-ended someone and totalled my car, but never saw a doctor. Had terrible whiplash and have always had tingling in the middle left of my back off and on since. (at least 15 years)
I am on Topamax, which  know can cause tingling of hands and feet, but I do have it noted as a symptom when I was off the med for at least 6 months.
I am due to have some Evoked potentials done and another MRI in July. At this point the MS specialist feels that the frontal lesion could be from migraines and the deep cerebellar peduncle one is possibly viral related.
If this is all viral related, isn't there some test that would show a virus? Would an infection have shown in the spinal fluid when I had the LP when the facial numbness was full blown?
I keep going back in my mind to little things where my husband and friends keep telling me it's just an "age" thing (cognitive stuff...word finding, attentivness, zoning out, stepping over my words) and even back to the car accident when I don't even remember the whole block that I drove prior to hitting that car! (no folks, I was drinking or anything!!!)
If anyone can help on what to do next....I can't sleep, becoming depressed and slightly obsessed with trying to figure this out.  

5 Responses
469901 tn?1276563623
WOW.  It is definitely not just age.  (I hate when people say that.)  I wish I had some wonderful epiphany to offer you, but I don't.  My suggestion is to change doctors and keep searching.  Don't stop until you get a diagnosis.  It can be a long, frustrating road, but you have to keep moving so you can get the right treatment or cure.  
492849 tn?1230067923

I came accross your post while I was looking up stuff about lupus because I found out I may have it.  Have you been tested for other diseases such as fibromyalgia, addison's, scleroderma,celiac, cushings or sjogren's?  The thing with the eyes makes me think sjogrens.  I'm no doctor tho...lol  Hope this helps.

Michelle  :)
Avatar universal
Thanks for your responses. :-)

I have not been tested for fibromyalgia (I generally do not have any fatigue problems) and I would have never even thought of Addison's...as my mother-in-law has it...i just don't think that's it. Cushings:  I don't have any of those symptoms at all...no blood sugar, blood pressure, fatigue or bruising problems and no upper body obesity! Scleroderma: no skin issues what so ever. Celiac: I guess it could be possible..I do have a few of those..but it would seem more like irritable bowel to me b/c I seem to bounce back and forth between constipation and diahrea and will have bloating. The joint swelling may fit in there, I guess? Or with the Sjogren's? Sjogren's: Someone else posted this one another board, but it seems that dry eyes and mouth are such a major symptom of this disease and simply don't have that! The only time I had the issue with my eyes was when I initially had the facial numbness and it didn't last more than a week or two, at the most. Have not had any problem since. I wouldn't say it was dry then, just extremely itchy.

I do appreciate both of your posts and the suggestions of possible disease to look into. This is why I am so frustrated. I can't seem to find anything that seems to match up. It is really eating away at me. I do have evoked potentials set up for the end of May and another MRI in July. I am just hoping it gives some answer b/c it will just make coming back home with no answers unbearable!
Avatar universal
the definition of MS includes finding a lesion in two different locations, so you cant completely rule it out- it sounds like your MS specialist doesnt necessarliy think that it is actually MS- tha't good
has your blood work come back? call the doctor and the lab to see.
i did learn that there are differnt severity levels of MS- there are some "lucky" people would have exacerbations and recover to near normal, then they can have it again, then go back to near normal again.

i totally know how you feel- the tingling you have peeked my interest-i have something- not sure what- i have a high ANA and tingling a lot and numbness- bad fatigue and joint pain- first the doc said lupus, now he doesnt think so.. i lately have burning eyes- suggestive of sjogren's- i can relate to how frustratin it is- i totally obsess over finding an answer to i can fix it and feel normal

i read that the usual first symtpoms of MS is vision promblems.

i am beginging to think some of this it a wait and see game- just wait for more specific symptoms to arrise so the docotrs can be sure how to treat correctly

the thing about ms is that the early its treated, the better outcome- so i guess its good that you are obsessed because then you will follow up with the diagnosis.

i hope its not MS!  God bless you!  Feel better! Take care of yourself
Avatar universal
Have you ever seen a chiropractor?  He can adjust your cervical spine (especially the C5 - C6 area) of you neck that has the protusion.  All your or some of your symptoms COULD be related to your motor vehicle accident you had several years ago.

Just a thought.

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