Another New Member with questions…

Thank you both for your replies; I appreciate the information and help!

It’s probably coincidence, or something completely unrelated.

Emily’s_Mom mentioned stress…none of THAT around here!:eek: Onset of a bunch of weird neurological symptoms, which are causing me to miss work about a day a week; the economy being in the dumpster; being a 100% commission salesman in a “dumpster” economy…like I said…no stress here!:(

I was diagnosed with Meniere’s about eight years ago, at which time they found 4 plaque spots on my brain. Did a full MS workup and found nothing else, so they decided that the lesions were just from having an “active” childhood…bumping me head, etc.

I’ve been complaining to my GP for at least 4 years of pain and weakness in my arms. Like many here, I’ve been given “token” diagnoses and sent on my way. Been told everything from Fibromyalgia to TMJ to being a Drug Seeker to being crazy. When the EMG showed demyelination, it sounds sick, but I was actually happy! FINALLY, I thought…evidence that I’m NOT all those things written above! Then, when I read about CIDP, it read like the author was writing about me personally. Prolonged F-Waves, Decreased velocities, Myelin damage, fatigue, both sides effected, dysesthenias, intention tremors, etc. The intention tremors have progressed quite a bit…took me several tries yesterday just to tie my shoes!:o

I filed for FMLA coverage from work, at the suggestion of my GP, because of the severity of the symptoms, but not a “total” FMLA…just allows for 4 days per month for missing work due to symptoms and tests/appointments. I’d like to know how many out there work with this disease, because I gotta tell ya, if it doesn’t get better soon, I’m not going to be able work much longer. Combine that with the fact that two days after having my FMLA approved, I was counseled that my job is in jeopardy. NOT because of the FMLA, they said, but because of the economy and lack of sales. Like my flare up…must just be a coincidence.:rolleyes: I said to my wife, in my best “just kidding, but not really kidding” voice, that if this keeps going at this rate, I’ll be in a wheelchair inside six months! I read that many use a cane…I don’t know that I COULD use a cane, because of the primary involvement in my arms. I get so weak after the smallest effort! This has been the hardest part of all this so far…I’ve always been “Joe Fix-It” man around the house…rebuilt my daughter’s house for her, always going, always working on some project. Always took pride in being able to work longer and harder than most, and lift more than most. Now I feel like a sponge….soft, pudgy, and lay around. If I do 1 day’s “good” work, I’m shot for at least 3-4 days. Very frustrating.

I should mention that I had a cervical fusion two years ago, on C6-C7. There is an existing radiculopathy there, but I’m told it’s stable. Other chronic back and neck issues, but all the MRI’s, etc., show no severely pinched nerves or anything else. As the radiologists phrase it…they’re “unremarkable”.

For at least ten years I’ve had an unusual feeling in my legs at night: when I lay down, or often after sleeping for about an hour, I will get this “pain” in my lower legs. It starts at the knee, and feels like a burst of current running from my knee to my toes…when it hits the foot my foot and toes all hyper-extend. This lasts for 2-3 seconds, it fades, and then 5-10 seconds later, it repeats. I’ve tried stretching, ice, heat, etc.,…the only thing that works is Ibuprofen. No one has ever told me what THAT is….many tried saying it was restless leg, but a couple of specialists have told me that it’s definitely NOT restless leg syndrome.

So, anyway, I appreciate your posts, and really appreciate this site being here. It’s helps knowing you’re not “wandering in the wilderness” alone. Sorry this is so long, but venting feels good…ya know?

Thanks again!

Elmo

Thanks, Dick…all good points.

I started keeping a log a few weeks ago, but kind of fell away from it after this last neuro appt. I need to get back to it.

I’ll probably start a new thread, as that raises another question…when is something a “symptom” and when is it just “life”? Know what I mean? I almost feel like I didn’t distinguish symptoms well enough during my first neuro appt. He said that, based on everything I had mentioned, that there was no clear dx for any “one” thing. I’m thinking of writing everything down, but listing it according to severity/incidence, to better help with a dx. Something like “these are my top three concerns/symptoms, followed by secondary concerns, followed by things that may have happened once or twice. Does that make sense?

Like I said, though, I’ll start a new thread with a general question to all about when a symptom is a symptom.

Thanks again!