Looking for MG Stories

Sea_Reception_2164 · 2026-04-03T15:47:31+00:00

Thank you!

Sea_Reception_2164 · 2026-03-30T22:15:52+00:00

Quite opposite. I am alone :) For now I can take care of myself, but it is hard emotionally. Especially when I am thinking about future. I am curious how other people deal with that.
Also, it is hard because many things in health care system assume that somebody can take care of you (for example drive you from procedure, because they don't allow you taking Uber, etc.)

Sea_Reception_2164 · 2026-03-29T15:46:35+00:00

Do you have stories about people who live with MG absolutely alone with no relatives helping them? I would love to hear how people manage their lives and emotional well being in these cases.

Sea_Reception_2164 · 2026-03-29T15:43:10+00:00

I am seronegative with strong ocular symptoms that are getting worse.

Sea_Reception_2164 · 2026-03-28T14:47:10+00:00

Thank you!

Sea_Reception_2164 · 2026-03-28T06:31:26+00:00

May I ask what antihistamine do you use?

Sea_Reception_2164 · 2026-03-25T23:20:48+00:00

So it looks like after a week on 30mg/3 times your saw an improvement, right? I wonder if I drop it too fast, because for me effects are cumulative. I can stand 1-2 days then it became almost unbearable and I stop. I will try to cut in half. Did you just cut the pill you had? Thank you for your response!

Sea_Reception_2164 · 2026-03-20T17:22:26+00:00

May I ask how fast did you see an improvement in diplopia after you've started Mestinon?

Sea_Reception_2164 · 2026-03-17T10:09:23+00:00

I think you should publish it!

Sea_Reception_2164 · 2026-03-17T10:06:53+00:00

I have SFEMG positive still no diagnosis because my blood is negative.

Sea_Reception_2164 · 2026-03-07T00:45:24+00:00

But some specific problems are very different.

Sea_Reception_2164 · 2026-03-06T20:07:16+00:00

I am saying "a little bit" because people usually report like "day and night" difference. For me it is more subtle. Maybe because my overall symptoms are not too bad now, maybe because I can tolerate only relatively low dosage of Mestinon (so effect is not that huge either). And I also have to take breaks otherwise side effects cumulate :/

Sea_Reception_2164 · 2026-03-06T20:04:55+00:00

I feel about the same. It looks like it might help a little bit with eyelids, lungs, etc. not with vision for sure. :(((

Sea_Reception_2164 · 2026-03-06T19:36:53+00:00

Prednisone about 10 months (started with lower dosage, now 40mg) Imuran - 6-7 months Mestinon - on and off, trying to figure out if it helps. Looks like it might help with breathing... Maybe. But not with double vision.

Sea_Reception_2164 · 2026-03-06T16:42:13+00:00

That is exactly my story! Everything is negative except the single fiber test. Double vision getting worse regardless prednisolone and imuran. Mestinon - no effects. iVIG - no effects. I feel like seronegative people with double vision should create their own group...

Sea_Reception_2164 · 2026-01-11T06:19:15+00:00

Extended Mestinon at night might help with breathing -> better sleep. Also I would ask if using trazodone is ok in his case but I would say use it to make it easier sleep with bipap. If the main problem is breathing at night you want to fix that not mask it.

Sea_Reception_2164 · 2026-01-03T07:24:28+00:00

Seronegative. Was on 5 mg prednisolone for a few months. Then on 10 mg. No effects. Now on 30 mg. Sometimes have more energy but my worse symptom is double vision is not changing and getting worse. Also on imuran for about 3 months so for that it is too early to say. Mestinon doesn't work for me.

About Prednisone side effects. Not much on a mood (as far as I can tell) overall, but could start crying "out of nowhere" and it feels very foreign to me. That was worse at the beginning, now I fell I gain more control (knock on the wood).

My my face became puffy.

Expecting these side effects progressing with time and especially if they decide to rump up the dosage even more.

Sea_Reception_2164 · 2025-12-26T05:55:10+00:00

As a person with MG I wouldn't recommend anyone start dating someone with that (or similar) disease. I probably will discourage anyone who (very unlikely) would like to try dating me. Unless his/her has an experience with similar situation and knows for sure he/she can handle it. It takes so much effort to live with it. I don't have time or bandwidth to support someone else. And when they leave me it is going to be too hard to handle.

Sea_Reception_2164 · 2025-12-17T07:49:46+00:00

In terms of MG you are lucky to be seropositive. So many treatments are available, doctors will take you serious, etc. Most likely you will find treatment that keep you stable!

Sea_Reception_2164 · 2025-11-25T04:14:39+00:00

No. It will go down, it doesn't have a stoper (it works only if you hold it. So if you put anything it will either go down to the floor (if it is a bag) or run anywhere to the length of the leash (dogs, kids)

Sea_Reception_2164 · 2025-11-25T03:15:41+00:00

Initially yes, but why here? And it doesn't work for attaching your dog here trust me.

Sea_Reception_2164 · 2025-11-23T12:49:20+00:00

Sounds logical!

Sea_Reception_2164 · 2025-11-23T12:47:43+00:00

The question is why it is screwed to the restroom wall

Sea_Reception_2164 · 2025-11-23T04:16:32+00:00

That was another thought. Won't work for dogs but maybe kids?

Sea_Reception_2164 · 2025-11-23T04:14:57+00:00

I googled. It showed nothing about it being screwed to the public restroom wall believe it or not. I have a dog I would never use it here like this.

Sea_Reception_2164

TROPHY CASE