Hi,

I'm new to the forum and thought I'd chime in because I could really use some advice. I am 28 years old, and until recently I have been very healthy. After several weeks of health complications, I am now I am facing a possible MG/possible MS diagnosis.

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

* 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 3cm lesion in the left motor strip of my brain
* oligoclonal bands in my CSF
* ACHR modulating antibodies (56%)
* striational muscle antibodies (1:120)
* extreme fatigue and head fogginess
* a host of other unexplained symptoms and labs

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. Half of the neuros I've seen say it's an atypical presentation of MS, while the other half say it is definitely not MS. I just recently had the ACHR and striational antibodies turn up. The doc from the hospital (the one who ordered the tests) seemed in a panic about following up on them, but the neuologist I just met with said this is MS and we shouldn't be worrying about anything else. He didn't even want to look at the ACHR labs. So dumb...I am ready to give up on the whole thing.

I am hoping something about my case will sound familiar to someone who can help. I am starting to think there may be more than one condition at play here. Is is possible for the ACHR mod and Striational Muscle antibodies to show up without having MG or thymoma? Is there anything else that could cause those to trigger positive? Does anyone know if the actual numbers (56% and 1:120) have any significance?

Has anyone heard of MG or thymoma causing such severe paraparesis (leg weakness), oligoclonal bands, or a brain lesion? I'm guessing not.

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