new here, not yet dx, Neuro says poss Neuromuscular disease,looking for info

[Guest guest]

Hello everyone,

I hope you all don't mind if I jump in and ask some questions. I feel

like an " internet message board floozie " , lol! I've been getting

around. I think this will be long, sorry. Read fast, lol!

My first stop was at an MS message board nearly two years ago. My

symptoms were, and are very typical of MS. Several doctors suggested

MS, so I started down that trail. I have a few brain lesions, but they

aren't big enough, although they are in the right place for MS

lesions. All other tests for MS have been negative. I read with

interest that some of you have been through this same thing.

I ended up seeing a Rheumatologist around the same time. I still see

him every two to three months. He says he feels like I may have a

connective tissue disease that just hasn't fully presented yet. I have

had a positive ANA two times, and a high CRP once. He also feels

though that something more is going on, and has encouraged me to keep

looking for answers.

Until recently, I have not had much luck with neurologist. If they

can't see it, it must not exist. Things started to change several

months ago though, when I developed ptosis (is this a strong indicator

of NMD?). My latest neuro was about ready to dismiss me as most of the

others have, until he received a letter from my Opthomologist (she

tested me for MG, but it was negative). Suddenly, things start

moving.The neuro called my PCP and they decided I should see a

neuromuscular disease specialist. So, that will be my next step. My

appointment isn't until May though.

I started researching some of the NMD's, and so many things are

strangly familiar to me. I used to have the cyclical vomiting as a

child. My youngest daughter has gone through it too. I used to get

migraines, but I think being on the Neurontin has helped that. I was

born two and a half months early, as was my brother.

I am adopted, but have met my birth parents. My adoptive mother says I

did not start walking until I was 18 months old. The doctors told her

I may have had CP. One of my feet turned in when I walked. I took

special ed classes for gym, they said I had uncorordinated muscles.

I'm not sure if it matters or not, but on my father's side of the

family I have a half brother with autism, and he is also mentally

retareded. I have a niece on his side too, who died of epilepsy as a

teen. A half sister had lazy eye, which I also have. I have IBS, which

I can control to an extent if I eat a decent diet.

My symptoms now are pain, and weakness, in my legs and upper arms. I

cannot walk very far without having a lot of pain. I have a vibrating

sensation, mostly in my legs, but I do get it in my neck. I have

trouble with my balance also. Anything I do with repetitive motion, or

exertion brings on more symptoms (I'm almost never completely symptom

free)

I just finished PT and OT. I have documented weakness from the OT from

the grip strength machines in both hands...3 standard devations below

normal. I also have a weak pincher grasp.

Does any of this sound like it could be from a mito disease? My pcp

wants me to have a muscle biopsy, another LP, and MRI's, but we agreed

it would be better to have the NMD neuro to order these, and to have

them done at the teaching hospital where he is located.

I have a lot of questions, but I will stop here. Thank you so much for

any information you can give me. And I do realize that you all cannot

diagnose me over the internet, if only it were that easy, LOL!

I just want your experiences, and knowledge.

Thanks again.

Shar