Who diagnosed you?
 

Hi all I am new here. My vision is worse so while support online means so much to me as I am homebound most days an hour online is alot for me.

I was diagnosed by my pulmonologist. I had told my neuro about what was happening in my back and arms-hands but she prescibed me pads for my eblows saying I must have leaned on my elbows on a table then she wooshed out of the room. Later I mailed the order for the pads back to her adding a note that said I dont have a table to lean on nor do I lean on anything else. Also said this has gotten worse in flares, as time has passed with my myasthenia getting worse.

I love my lung guy and am grateful he added this to my diagnosis.

Annie59

Hi, Annie -

First of all, with what exactly have you been diagnosed (from a neurology standpoint)? Please give us a bit more detail about this if you can and how you were diagnosed.

I was diagnosed almost nine months ago with non-length dependent small fiber neuropathy by a Cleveland Clinic neurologist via punch skin biopsies.

Sheltiemom

I was initially diagnosed in the hospital when admitted in 1999 for a
non PN issue, but while I was there I complained of burning feet.
They examined me & after a while, finally said, ;
"Oh, by the way, your feet burning... is neuropathy".
I then got an appointment at Johns Hopkins neuro dept. and was tested
to determine that it was length dependent, axonal, sensory polyneuropathy.

Annie59 is from the Myasthenia Gravis forum here.

I am assuming she is having "nerve" pain in the arms, am I correct, Annie59?

My diagnosis "officially" came from my neurologist at Virginia Mason in Seattle but it first started with complaints of pain and numness in my toes that were first diagnosed as a bulging L5S1 disk. After a couple years of PT and Spinal Injections, it did not get better. I ended up in the ER after a week of vomiting because of pain when the ER doc came in and said your Blood Sugar is over 400 did you know your diabetic?? My A1C at that point had been dangerously high. I had a consult for back surgery scheduled with a neurosurgeon at the time so I went in and he told me based on my MRI that surgery would help with the sciatic pain in my left leg but as far as he could see nothing was wrong with my right side (from a spinal standpoint) he referred me to a colleage a neurologist who did an EMT and confirmed diabetic peripheral neuropathy. After that it was a matter of surgery to correct for sciatica and trial and error with pain medications to get the pain that is now in both hands, both legs below the knees under control, AFO braces for motor neuropathy, and a wheelchair for at work. Along the way in there somewhere was a bout with gastroparesis that caused six trips to the ER in 2 months and caused me to lose 60 pounds because I couldnt hold down food. Thankfully that part of my life is over.

I always wonder about the if onlys... if only my docs had done a 5 sec blood glucose test along the way, if only i had eaten better and excercised more, if only they didnt keep saying you havnt had Diabetese long enough for neuropathy.. but if onlys dont feed the bulldog.

Now I swim, watch what I eat, take my meds, and am more assertive with my doctors.

Back in March, I saw a doctor who said that he could tell that I had a neurological problem, and that I needed to see a neurologist. I did, and she had absolutely no idea what the problem was. Eventually (a few doctors and tests later), I went to Mayo Clinic in Rochester, MN. After what feels like a million different tests, they finally diagnosed me: polyneuropathy--small fiber, large fiber, and limited autonomic neuropathy.

I am sorry that you have been plagued with so many problems Sarah Mae... Glad to hear that you did get a proper diagnosis though.

Mere