newbie needing support
 

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)!:eek:

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!:)

Don't lose hope?
 

Go and read the sticky's/ important links...then click on any blue links and see if you can find things that are relevant. You mite be surprised?
I kind of hope and yet don't hope that the spinal results show signs of immune-ness. Why? Because treatment options are very limited and often require either an expensive long-term commitment or interesting [?] side effects.
I understand because I'd had a severe pneumonia in '02, then started PN in '03 and have had an immune PN since then...it was diagnosed in '04. Then treated, and still am. I was lucky?
It does sound tho, that your docs are really trying to get and be on top of it. Tho how they mite treat it is dependent upon their medical biases [training-indoctrinations] and your insurances. Sad but true facts of life these days. BUT, ANYTHING that gives any relief without drastic side effects? THAT is well worth it!
Read Learn Ask questions! Nothing is too silly to ask! Sometimes it's the silly things that are the keys. Hang in there, there are many here who understand! :hug::hug:'s - j

Thanks so much for your kind and informative reply! I spent a good part of last night and several hours today looking over the message board and links. I've certainly learned a lot. I've spent the last few years immersed in MS (ask me anything about it :p) and am ready to explore other avenues.

I picked up my LP results and it looks to me like they were normal. I did notice that Obands were not ordered. I asked why they weren't ordered when I got to the hospital. I don't they were ever able to reach my doctor (it was the day after Christmas) to find out. I knew something wasn't right when they didn't draw my blood the same day (I've had one done before).

It's interesting that you also had an infection before you came down with the PN. What kind of PN do you have? How many doctors did you have to see before you got answers?

Yes, I am lucky that I finally found a neuro who is trying to help. I still wonder though if I should possibly be seeing a neuromuscular neurologist. I have seen a Rheumatologist off and on for several years because I have had a few auto immune markers show up in my blood. High ANA twice, high CRP once. But, they don't make much of it.

Well, I better go. Thanks again for your input.

:)