Hi there
I have posted on other forums here and elsewhere before. Long story short, I have experienced 3 yrs of unrelenting facial pain, headaches, burning pain, cranial neuralgia pain (throat spasms, eye pain tugging, burning, ptosis), severe anxiety and more recently, feeling off balance, muscle pain after the slightest activity, and sensations in my buttocks, bladder, etc., as if I am not about to walk correctly soon.

Ive had every test in the book, except a brain biopsy and think I may need it!

I have 1 T2 bright spot on my brain and some microhemmorhages. I also have 2 oglioclonal bands only in my csf.

I have a positive blood lyme, but in csf its low.

In serum I also show reactivity to paraneoplastic antibodies initially but unconfirmed on western blot. This is concerning to me. We are awaiting results to see if they are in the CSF.

I have low serum complements c1q, c3 and c4, but dr said that may be because csf intrathecal synthesis autoimmune response to something. I also have a history of anticardiolipin antibodies.

My lumbar also showed normal cells, index, etc. EXCEPT the pathologist noted "rare smudge cell seen." This is also concerning. Dr is checking to see what the pathologist means by rare - there was only one so maybe thats what he means? The concern is because the only association we have seen is with leukemia.

So I am worried that I have some kind of occult cancer that has gone undetected for three years. I really was okay for the last 2 years and surviving with daily activity, exercise, feeling good but in the last 9 months I have gone downhill. I read about scary things like neoplastic meningitis and now am convinced I have something in my csf that is malignant. I did have a full body including brain PET scan so you would think something would have shown there.... still panicking..\

I know these are not the type of questions you get on here, but was wondering what anyone who has had oglioclonal bands in csf only but not serum and does not have ms has been diagnosed with.

My dr is still leaning towards post infection.... I had a nasty case of infectious mono years ago and still show reactivation and cytomegalovirus as well. I will also add that 17 yrs ago (Im not 47), I had a "flare" of symptom similar but much less in intensity and last for only 6 months. I know that doesn't prove MS but I cant help but think its somehow related....

Im so freaked out right now, I don't know what to do.

L