rose
Extremely helpful member
- Joined
- Mar 29, 2008
- Messages
- 2,925
- Reason
- DX MND
- Diagnosis
- 7/2008
- Country
- US
- State
- Maryland
- City
- Anytown
Thanks for all the positive responses to my previous thread
(Beth, I'd forgotten you'd tried the Mestinon)
I think maybe the part about my neuro being almost positive that I don't have MG has gotten lost in the shuffle here. She said the repetitive stim NCV most likely would have had abnormalities if I had MG, and that my elevated Ck also points away from it. (and of course the normal antibodies, no eye involvement and no thymoma.) All doctors felt that with the amount of prednisone I'd been on, if it were MG, I would have shown some sort of improvement when taking it, especially those weeks where I was on 60mg a day.
What I wonder is if the mestinon is ever helpful with another condition, and that is what my neuro is actually looking for. I think this drug works at the neuromuscular junction, isn't this also where the mitochondria is?
Does anyone know about other uses for the drug? An internet search has not turned up anything for me.
So far, other than the increased twitching, all I've noticed from the mestinon is that my speech is worse.
(Beth, I'd forgotten you'd tried the Mestinon)
I think maybe the part about my neuro being almost positive that I don't have MG has gotten lost in the shuffle here. She said the repetitive stim NCV most likely would have had abnormalities if I had MG, and that my elevated Ck also points away from it. (and of course the normal antibodies, no eye involvement and no thymoma.) All doctors felt that with the amount of prednisone I'd been on, if it were MG, I would have shown some sort of improvement when taking it, especially those weeks where I was on 60mg a day.
What I wonder is if the mestinon is ever helpful with another condition, and that is what my neuro is actually looking for. I think this drug works at the neuromuscular junction, isn't this also where the mitochondria is?
Does anyone know about other uses for the drug? An internet search has not turned up anything for me.
So far, other than the increased twitching, all I've noticed from the mestinon is that my speech is worse.