Hi,

I'm new to the forum and thought I'd introduce myself and my current dilemma. I am 28 years old, and until recently, I have been quite healthy. Within the past four months, I have been diagnosed with MS, undiagnosed with MS, diagnosed with "clinically isolated syndrome" and again, diagnosed with MS. It has been a complete circus. I am about ready to give up, but the lesion in my head and the fact that I still can't walk sort of gives me some energy to keep searching for answers.

I just finished up six weeks in the hospital (brutal!)--two in an acute setting where I underwent every test my docs could think of to help them settle on a diagnosis, and then i spent four weeks in acute rehab, trying to regain the ability to walk.

In a nutshell, I have

* a "tumefactive" lesion in the left motor strip of my brain (3cm)
* oligoclonal bands in my CSF
* severe weakness in both legs (improved somewhat with IV solumedrol steroids at 1000mg/day for five days. I still require a walker/crutches to get around)
* a clean spinal MRI
* ACHR modulating antibodies (56%) (acetylcholine receptor issue, often associated with Myasthenia Gravis)
* striational muscle antibodies (1:120) (also associated with myasthenia gravis and thymoma or thymic carcinoma)
* extreme fatigue and head fogginess
* muscle and joint pain
* loss of function in my left arm/hand. (Improved with time and steroids.)
* a host of other unexplained symptoms and labs

The primary objective of those first two weeks in the hospital was to determine if the lesion in my head was a demyelination or if it was a lymphoma or other sort of tumor. Obviously a single lesion is atypical for MS, and the size is also atypical, at 3cm. The other issue was finding the source of my paraparesis (leg weakness). The left sided lesion with no spinal involvement doesn't really explain bilateral loss of function. I left that first hospital with three docs signing off on a diagnosis of MS, but as mentioned, that didn't really stick.

As of right now I have no diagnosis and I haven't found a neurologist who is willing to engage in my complicated case long term. I do realize that it can take a great deal of time to confirm a diagnosis of MS. I am hoping something about my case will sound familiar to someone who can give me some insight. Does anyone know anything about Tumefactive MS? Does anyone know of anything else that could cause a brain lesion, O-bands, and extreme paraparesis? Also, I have no clue how those Myasthenia Gravis labs play into things....myasthenia gravis shouldn't cause brain lesions or O-bands, and I don't have any facial or ocular weakness at all.

It's all so confusing, and I'm emotionally exhausted from this whole thing. If anyone has any thoughts or suggestions, I'd love to hear them.

Thanks!

Mandy