NeuroTalk Support Groups - UPDATE

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - UPDATE - Mestinon (https://www.neurotalk.org/myasthenia-gravis/192054-update-mestinon.html)

I have Lems, too and mestinon is what saved me until I could get further treatment. Dave, there is a private Lems group on Facebook where you can get a lot of advice on treatment options.

Quote:

Originally Posted by Brooketrout (Post 1003345)

So I have been on the Pyridostigmine and at first it was dramatically improving my eye, but I guess now my body has grown immune to it because it no longer helps. This is a common problem for me with other medications, so I can't say I'm surprised. I was taking 60mg but only half in the morning and half at night. When it stopped working I decided to up the does to one whole tablet of 60mg in the morning and one whole tablet at night, but so far it hasn't helped. I'm pretty disappointed :( Now I'm back to looking weird again and it's hard to accept that this may be my new reality.

ORIGINAL POST:
Hi Everyone,

After having an MRI, 2 CT's, and numerous blood tests, I still do not have any concrete answers. Although I have tested negative for MG, my neurologist said that my droopy eye is the very first symptom of MG so she has put me on Pyridostigmine which I am starting today. She wants me to take this medication for 2 weeks to see if my eye improves. She feels that it is still possible that I may have MG, but still tested negative because I am in the early stages. To me, it feels like they are grasping at straws. Has anyone else tested negative and then it turned out they had it, or gone through a similar situation?

I have tested negative in every test except the electro muscle stim. My neuro declares my dx based on clinical symptoms. In my darkest hours I wonder if it's really something else, but normally, I'm still trying to get used to a chronic disease. (Dx 3 months ago)

Quote:

Originally Posted by Jerry M (Post 1014199)

Jerry, ALL my tests are negative as well. I don't have any facial symptoms or eye drooping. I respond well to Mestinon and most of all my other symptoms fit. I too sometimes wonder if it could be something else.

OMG I am having the same issue! I just signed on because I decided to give mestinon another try after a terrible week of weakness. The first week I noticed a marked improvement in my eye/face droop. I also had a significant energy level increase and also notice my sleep was much more restful. My coworkers even noticed that I seemed much more peppy and talkative (I wasn't dragging along as usual). But on week two, I seemed to be right back to where I started if not worse. I was taking 30 mg in the morning and 30 midday (if I take it too late, I can't fall asleep). I am so frustrated. I would happily trade the side effects (sweating and GI issues) for the increased energy in a heartbeat. Can someone build a tolerance that would need an increased dosage?

Dave, mestinon only works for 3-4 hours. Did you feel any effect of it wearing off before the next dose? I can feel it wearing off at about 3 to 3.5 hours. Every six hours seems like a large span of time.

Mestinon only temporarily relieves symptoms. It does not make you feel like you did before you had MG. For me, it improves my symptoms by about 20%. I take it a half hour before meals to prevent choking. If I missed a dose, I would not be able to do activities like grocery shopping. Did you see any improvement in stamina? It is not going to be a drastic improvement. But I will take every bit I can get.

thanks
kathie

Well I'm back on the ivig every 2 weeks
Neuro appt next week to
Talk About what to try next
It is getting to the point
I can barely walk 8 to 15
Feet without needing a rest
Getting really sick of nothing
Working

check your area for the availability of DAP (diaminopyradine) it worked wonders for me . try contacting the neurology dept. at duke university n.c.
dr. vern juel.

Quote:

Originally Posted by davew41 (Post 1015963)

Quote:

Originally Posted by cait24 (Post 1014855)

no there was 0 effect at all

Quote:

Originally Posted by Brooketrout (Post 1003345)

Hi,
That dosage seems to be low. I take 60mg every 4-5 hours. Plus I take Mycophenalate 1000mg twice a day. When I spoke to My Neurologist he said it wasn't unusual for people to be taking Pyridostigmine every 2-3 hours. So don't give up and give it time to get into your system. It took me a couple too three months to get to the right dosage for me...

Hi there.

Yes ask your neorologist for a nerve conductor test it was the only thing that positively identified my MG, blood tests often show negative. Also, I started mestonin (Pyro) 1 1/2 tablets 4 times a day with a 20mg steriod (Prednisone). It took a good month for any significant results so you may want to ask your doctor to up the dosage. Hope this helps