All I Need is One Person Who Can Help Me

[dz56]

25 years ago I was diagnosed with cryoglobulinemia at a well known medical center in Chicago. ( non Hep C)  I tested positive for years. Didn't go to the doctor for a few years but recently went back to some new doctors and this year I tested negative but I still have all the symptoms.  They include but are not limited to -

- numbness/tingling my entire body - yes including my tongue and top of my head.  It's always steady and sometimes worse.  (this started when I was pregnant 31 years ago)  Never ever goes away.
- lots of stabbing and burning pains
- shock like crushing pains in my head

There must be an underlying disorder but no one seems to be able to figure it out. Before they found the cryo they thought I had MS because all my symptoms are similar to MS.  I just went through a battery of tests including ANA -negative.   I had an MRI that was abnormal but after that I had a cerebral angiogram that was normal so they ruled out most everything.  They thought it might be vasculitis because of the head pain.  All I want is to know what it is.  I know this is a difficult case but it's extremely frustrating when they just leave you hanging.  First the numbness/tingling started then a few years after that the severe head pains started.   I recently tested positive for thyroid microsomal antibodies.  I had 2 partial thyroidectomy's (non cancer).  First one 32 years ago and the last one May 07.  Goiter is returning on remaining part.  I was one of those people who had irradiation to the head and neck for tonsil problems in the 1950s. Also my liver enzymes are slightly elevated since last year.

Please all I need is for someone who is versed in this to tell me where to go.  I'm so frustrated right now.  I just wish I never started this retesting again.  Right now what I really need is some relief from all this frustration.  Thanks to anyone who can help me.

[dz56]

That was scary reading all that stuff.  The thing is I have almost all of the symptoms.  Thanks for the info and response.

[Carol in PA]

The underlying disorder might be one of the tick borne infections.
http://www.lymeinfo.net/lyme.html
http://www.canlyme.com/

Wishing you the best,
Carol

[dz56]

Thanks for your comments.  No they didn't test me for polio.  That's a good idea.  I had my baby naturally.  I was miserable the entire time but that might have been just because of being pregnant.  Tommorrow I'm going to a new rheumatologist at a university medical center.  I hope I find some answers there.  I can't go through too much more of this.  I know I'm not in this alone.  When I read these forums it's so sad - so many people need help and can't find the answers.  Why is that? There has to be some doctor somewhere that knows what is wrong with us.  I think they try the top 2 likely illnesses and then give up.  I wish you good luck in finding out your problem.  Let us know any updates and so will I.  Thanks again for your response.  It means alot just knowing you have support from people who are in the same situation.

[misha411]

I understand how you feel it's frustrating when you have all of these problems and symptoms but all of the tests keep coming back negative. I am in a similar situation, not exactly the same but a lot of things are similar.I had a baby nine months ago and I have had nothing but problems since the c-section. They have done MRI,s CT scans, and blood work and all coming back negative Don't lose hope there is an answer. If one doctor doesn't help you go to another like I've been doing. Did you have your baby naturally or c-section? Have they tested you for polio? they tested me but it came back negative. Good luck.any comments or questions about what I have done feel free to ask.