NeuroTalk Support Groups - meniston trial

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- - meniston trial (https://www.neurotalk.org/myasthenia-gravis/144696-meniston-trial.html)

Quote:

Originally Posted by DesertFlower (Post 743402)

Madnurse,

It took 5 to 6 months for the mestinon to (mostly) make my double vision go away, it was a gradual process. I have generalized MG, but in the beginning the double vision was my worst symptom. We all react differently, of course, some people find that Mestinon does not completely treat their double vision, I am thankful that it did for me.

I hope this helps.

DesertFlower,
Thanks, that helps. Since the half life of Mestinon is so short I didn't know if I would see all the benefits right away. But in your case, it sounds as if your double vision went away slowly.
I am only on day 3 of 60mg, 3 times a day. I feel like my ptosis is slightly better, and that my eyes react faster, and movement is less restricted (I was not able to look up or to the right fully). In the next few days, I will begin (per my neuro-opthamologist's instructions) to play around with the dosage to see what sort of effects I gain.
Thanks for the hope!

Quote:

Originally Posted by madnurse (Post 743271)

Cate,
I just mentioned the tensilon test to my neuro-opthamologist and he said he had considered it, but has decided against it for now. He said that tensilon is not easy to get, and that I would have to be hooked up to cardiac equipment when they administered it. We decided on the Mestinon since it seemed the least invasive. My eyes do feel more relaxed as you have said....i'm not straining quite as much to keep things in focus. Do you remember how long it took for the medication to be effective? Just wondering if it happens right away, or if improvement is gradual.

Thanks!

I noticed some improvement with my vision within a day or two of starting the Mestinon. I was on Mestinon alone for about 6 months, then Prednisone was started. Although the neurologist told me that I should see some additional improvement within a month of being on prednisone, it was close to 2 months before I noticed changes.

Unfortunately, even with the improvement with mestinon and pred, my double vision continues to be pretty much constant, and varies dependent on my activity, stress level, etc. I'm trying to be patient through all of this because I understand that it may take an extended period of time before the medication is entirely effective. In addition, I wonder if the double vision is treated during the early stages, then perhaps it is more responsive to the medication. I've had double vision for 8 years, but just being treated within the past year.

I hope you continue to see improvement on the mestinon.

Cate

If my memory is correct I started on 80mg of Prednisone for one week then tapered 20mg a week till complete. During the treatment I felt really good and could see some vision improvements. My wife said I wouldn't shut up, I was talking a mile a minute. The bad thing was it triggered an episode of diverticulitis which put me in hospital for 5 days of IV treatment. We are 90% sure it was caused by the steroids after much research.

Yes I have generalized MG. I have positive binding antibodies. I have had 2 IVIG treatments this week and 2 more next week but so far no change. My problem now is weight loss. I have lost 16 pounds since I went off steroids. I think it might be the imuran.

One thing I have learned about this disease is what works for one person doesn't work for another. It boils down to trail and error. That is why they call it "practicing medicine".
Mike

Quote:

Originally Posted by madnurse (Post 743512)

Mike,
I am assuming that you have generalized MG as well as ocular symptoms? My doc did put me on prednisone, but just for 1 month. He was thinking I had SREAT (steroid responsive encephalopathy associated with autoimmune thyroiditis) since i also have hashimotos. The steroid make me feel WONDERFUL, but did nothing for my double vision. But I have also heard that often times it takes several months of steroid treatment to respond.
Thanks for your input :)

http://books.google.com/books?id=qRY...page&q&f=false

Mestinon is not as accurate in determining if a patient has MG as Tensilon is.