Mediasmart
Distinguished member
- Joined
- Nov 4, 2013
- Messages
- 391
- Reason
- PALS
- Diagnosis
- 08/2013
- Country
- US
- State
- NY
- City
- Orient
I was referred into the Lou Gehrig Institute at Columbia Presbyterian about 2 months ago. Based on their findings, my case has gone from my local neurologist to them for the duration.
My EMG came back not in my favor although as I have Type II diabetic neuropathy, there seems to be a pile of data to sort out and of course the monitoring/retesting every few months. He says things are positive for ALS but is stopping short of the "official" diagnosis for reasons not terribly clear but since it makes no long term difference, there isn't much to understand.
I started loosing voice projection about 3 months ago with the swallowing difficulty, minor but constant drooling at the corners of my mouth and now fasiculations...not often but I can feel them and they showed on the EMG.
The business started last winter with some atrophy and lost of motion/strenght in my left hand that was at first treated by a hand surgeon who did the Ulner Nerve and carpal tunnel surgery with absolutely no effect other than a more rapid degeneration. Now I have fasiculations in about half a dozen places (intermittent), walk like a klutz and have lost a lot of mass here and there.
That's where I am this morning, finally joining the forum. I don't feel sorry for myself. I'm more concerned about those around me who know about it.
Any tips on relieving their stress and angst would be appreciated.
My EMG came back not in my favor although as I have Type II diabetic neuropathy, there seems to be a pile of data to sort out and of course the monitoring/retesting every few months. He says things are positive for ALS but is stopping short of the "official" diagnosis for reasons not terribly clear but since it makes no long term difference, there isn't much to understand.
I started loosing voice projection about 3 months ago with the swallowing difficulty, minor but constant drooling at the corners of my mouth and now fasiculations...not often but I can feel them and they showed on the EMG.
The business started last winter with some atrophy and lost of motion/strenght in my left hand that was at first treated by a hand surgeon who did the Ulner Nerve and carpal tunnel surgery with absolutely no effect other than a more rapid degeneration. Now I have fasiculations in about half a dozen places (intermittent), walk like a klutz and have lost a lot of mass here and there.
That's where I am this morning, finally joining the forum. I don't feel sorry for myself. I'm more concerned about those around me who know about it.
Any tips on relieving their stress and angst would be appreciated.