Hello everyone. I have been lurking here for several weeks. My story is rather long, but I'll try and give a condensed version.

I am not diagnosed with anything yet. I did find a wonderful, knowledgeable neurologist to help me figure this all out. It took seven tries though (seems like many neuros don't want to help you figure things out)!

My neurologist, is an MS/neuroimmunologist specialist. She seems to think that I may have had a viral infection that attack my nervous system. This has been going on since 2004. For a long time, everyone was focused on MS, but now, in my opinion that seems less likely.

My neuro says I have symptoms of both a CNS and PNS disorder. I just had a spinal tap done and don't have the results back from that. I had another MRI done recently, and that has remained unchanged. I still have three or four lesions in the periventricular area.

My symptoms started suddenly with numbness and pain in my feet. That lasted for about six weeks and I was symptom free for about a year. Then those symptoms came back and the numbness, tingling and pain spread up to my waist. I haven't been symptom free since. I seem to always have symptoms, but also have clear attacks when new sx develop or old sx are worse.

I have a neurogenic bladder with retention, have had neuropsych testing done which shows many deficits, some that are similar to those seen in MS. Delayed processing speed, etc.

Besides the problems with my legs, I also have difficulty with my arms, though it's not as bad. I have a hard time raising them above my head, and have pain with repetitive motions. I don't seem to have the numbness and tingling in my arms though. Heat increases my tingling and numbness...whether it's from a hot shower, a raise in body temperature, or being outside on a hot day.

I have had Lhermitte's sign with buzzing and tingling in my neck spreading down my arms. Fatigue can be a problem for me too. I told my neuro that I just cannot exert myself much anymore. Stairs are a problem for me too.

I have been tested for MG and that was negative. Through my own research I have wondered about mitochodrial disorders, though no one has ever suggested this. I also have a theory that we may be dealing with more than one thing. Or, it could be MS, but I might not meet the strict diagnostic criteria.

I have been unable to work full time since this started and was finally awarded SSDI a year ago. It is very frustrating for me to not be able to contribute to the family financially. We have three kids, two who are in college.

I do know I have some sort of neuropathy, so I thought I'd hang out here for a while. Any suggestions are welcome. I'm going to print up the LizaJane sheets and take them to the neuro next time I go.

Thanks in advance for all of your help!