I was under the notion that going in for a spinal tap would lead to a definitive Dx. After reading here awhile I'm afraid I may be laboring under a misconception.
I have small, symmetrical lesions on the outer cord at C2/3 per MRI (not reflected on EMG). Upper unilateral EMG has long since detected neuropathy @C6/7-which doesn't show on T-weight or Flare MRI.
I assigned the insane arm fatigue to Fibro and have believed to be Secondary Progression RRMS-early stage w cord presentation. This all began and initial EMG in summer 2010. I thought, at this point, stalled-out or slow progression in lesions.
I had no atrophy, but numbness and dropsies long since an issue in my hands. Things began to change 6 or 8 months ago. The fatigue became specific, localized and extreme.
Then came my hands. Both are fully "wasted" but my fingers have not yet curled at all. I couldn't find anyone else, "like me" but finally landed on the photos that were posted here in 2006. Yep. That.
Both hands have deteriorated rapidly and I've lost fine motor.
My fingers/hands kind of get "stuck" if I have my hand in one position for long. The joints lock up (jam I guess?) and I give it a shake to pop them back loose. It isn't painful-just like I need some oil.
Now I see that other areas are losing/have lost muscle and are either stark (gaunt) or sagging. (upper arms-biceps, lower abs, my face)
what was in my hands/forearms and feet (fatigue et al.) has moved solidly to shoulders and hips.
Am I really going to have to deal w these stupid doctors beyond collecting the disjointed scans and test results and going over GPs head after twice waiting 3 months to see the incorrect Neuro?
(Don't ask. He's bloody incompetent. He swears all of this is Fibro and hasn't seen my hands. Ortho Doc told me nothing except "This isn't something I can help you with. You should make an appt @the MS clinic."
It seems to be progressing daily. It's very rapid and widespread, in any event.
Are these hands and a spinal tap not enough? I don't relish the thought of hopping back on the merry-go-round of hit-or-miss doctors who refuse to admit, "I don't know." and each point the finger at the other.
I even have a Neuropsych who has reviewed the entire, combined litany of data and leaned hard on the GP and ortho surgeon-it's been a monumental exercise in futility.
It's pretty clear this isn't Fibro or MS, and I have been tested tip-to-stern by the Rheumy for all else. I don't make Vitamin D. My thyroid is a bit hypo. Nothing else.
Help...advice?
Oh! Btw, I'm Robin. I just turned 40. :wink:
I have small, symmetrical lesions on the outer cord at C2/3 per MRI (not reflected on EMG). Upper unilateral EMG has long since detected neuropathy @C6/7-which doesn't show on T-weight or Flare MRI.
I assigned the insane arm fatigue to Fibro and have believed to be Secondary Progression RRMS-early stage w cord presentation. This all began and initial EMG in summer 2010. I thought, at this point, stalled-out or slow progression in lesions.
I had no atrophy, but numbness and dropsies long since an issue in my hands. Things began to change 6 or 8 months ago. The fatigue became specific, localized and extreme.
Then came my hands. Both are fully "wasted" but my fingers have not yet curled at all. I couldn't find anyone else, "like me" but finally landed on the photos that were posted here in 2006. Yep. That.
Both hands have deteriorated rapidly and I've lost fine motor.
My fingers/hands kind of get "stuck" if I have my hand in one position for long. The joints lock up (jam I guess?) and I give it a shake to pop them back loose. It isn't painful-just like I need some oil.
Now I see that other areas are losing/have lost muscle and are either stark (gaunt) or sagging. (upper arms-biceps, lower abs, my face)
what was in my hands/forearms and feet (fatigue et al.) has moved solidly to shoulders and hips.
Am I really going to have to deal w these stupid doctors beyond collecting the disjointed scans and test results and going over GPs head after twice waiting 3 months to see the incorrect Neuro?
(Don't ask. He's bloody incompetent. He swears all of this is Fibro and hasn't seen my hands. Ortho Doc told me nothing except "This isn't something I can help you with. You should make an appt @the MS clinic."
It seems to be progressing daily. It's very rapid and widespread, in any event.
Are these hands and a spinal tap not enough? I don't relish the thought of hopping back on the merry-go-round of hit-or-miss doctors who refuse to admit, "I don't know." and each point the finger at the other.
I even have a Neuropsych who has reviewed the entire, combined litany of data and leaned hard on the GP and ortho surgeon-it's been a monumental exercise in futility.
It's pretty clear this isn't Fibro or MS, and I have been tested tip-to-stern by the Rheumy for all else. I don't make Vitamin D. My thyroid is a bit hypo. Nothing else.
Help...advice?
Oh! Btw, I'm Robin. I just turned 40. :wink:
I have been confounded and frustrated by the system to no end today. Healthcare is changing and medical care has suddenly all gone corporate. Or it seems so, after trying to wade through the mess these past 2 years or so.
