BethU
Extremely helpful member
- Joined
- May 11, 2008
- Messages
- 2,646
- Reason
- PALS
- Diagnosis
- 05/2008
- Country
- US
- State
- California
- City
- Los Angeles
Hi ... this is off-topic, but I've been sharing about my husband's neuro problems, which have been ongoing for many years. We just got back from the pain clinic ... and, thank heavens ... they were wonderful people. First thing they said reading his symptoms and history is "He needs to see a neuro immediately!" I told him he's scheduled with one for next week.
They said his original symptoms could indicate MS, and the fact that his MRIs were clean 30 years ago does not mean anything (and did not mean anything then, either), as many times MS does not show up on MRIs. They also said that his current symptoms could indicate an MS flare-up, but of course it will be up to a neuro to test and evaluate.
They also said the "break-through" pain med he has been taking for years is very weak and ineffective, and they prescribed something stronger. So he will be getting some relief I feel such relief myself, I can't tell you. Just the thought that he could get some treatment for something!
I realize I've got to start reading an MS forum, but that is really a crazy, complicated disease! I have no idea what people are talking about. So I'll have to learn ...
---------------Back to ALS-------------------------
On the other hand: I tried Mestinon again. Jumped through a few hoops to get my cardiologist to change my heart meds so I could take it, as I had had such good results the three times I had taken it earlier. (Taken it first for a week and a half in January, once for two months--March to May, and then recently to test it again for one day.) It produces immediate effects, so if it's going to work, you'll know within a few hours.
So I took it again yesterday ... and NOTHING! No energy, no increased strength, no nuttin. In fact, I was unusually exhausted all day. I don't think it was the placebo effect the first three times I took it. I think that whatever was happening with my ALS earlier this year just happened to respond to the muscle-junction effect of Mestinon, and that switch is now turned off.
Oh, well ... it was worth a try! The only good thing about it not working is that I really hate the side effects ... much more twitching and saliva. Yuk! Just what I don't need.
So ... it's plain old vanilla ALS for me. No fancy muscle-junction action.
Thanks for letting me vent!
BethU
They said his original symptoms could indicate MS, and the fact that his MRIs were clean 30 years ago does not mean anything (and did not mean anything then, either), as many times MS does not show up on MRIs. They also said that his current symptoms could indicate an MS flare-up, but of course it will be up to a neuro to test and evaluate.
They also said the "break-through" pain med he has been taking for years is very weak and ineffective, and they prescribed something stronger. So he will be getting some relief I feel such relief myself, I can't tell you. Just the thought that he could get some treatment for something!
I realize I've got to start reading an MS forum, but that is really a crazy, complicated disease! I have no idea what people are talking about. So I'll have to learn ...
---------------Back to ALS-------------------------
On the other hand: I tried Mestinon again. Jumped through a few hoops to get my cardiologist to change my heart meds so I could take it, as I had had such good results the three times I had taken it earlier. (Taken it first for a week and a half in January, once for two months--March to May, and then recently to test it again for one day.) It produces immediate effects, so if it's going to work, you'll know within a few hours.
So I took it again yesterday ... and NOTHING! No energy, no increased strength, no nuttin. In fact, I was unusually exhausted all day. I don't think it was the placebo effect the first three times I took it. I think that whatever was happening with my ALS earlier this year just happened to respond to the muscle-junction effect of Mestinon, and that switch is now turned off.
Oh, well ... it was worth a try! The only good thing about it not working is that I really hate the side effects ... much more twitching and saliva. Yuk! Just what I don't need.
So ... it's plain old vanilla ALS for me. No fancy muscle-junction action.
Thanks for letting me vent!
BethU