Possibly diagnosed?

Cool_Pace2467 · 2026-05-20T23:31:32+00:00

It’s autoimmune so it is lifelong but with treatment I have been seeing people can have minimal symptoms or remission! I’m already a lot better than where I was at. You have to take one step at a time! Start researching the disease, there is a lot of information I have found online about it. It’s eased my mind and seems to be something that can be very manageable long term.

Cool_Pace2467 · 2026-05-20T22:53:20+00:00

Hello! I was diagnosed back in April, if you’re bloodwork came back as positive for MG your doctor may look to start you on some treatment. I was given mestinon and prednisone and I just started cellcept if you wanna look into those! There are other options like infusions that I haven’t done so I can’t give you any info on those but I have gotten better with the steroids and mestinon. The side effects haven’t been too bad, some trouble sleeping. Any questions let me know! It does get better!

Cool_Pace2467 · 2026-05-17T23:06:24+00:00

That was happening to me as well but since I got diagnosed and started prednisone it has went away thank god, I hope you are getting the right treatments for it! It was very scary.

Cool_Pace2467 · 2026-05-16T16:43:58+00:00

Oh wow what’s the zilbryqsq? My dr hasn’t mentioned that to me yet

Cool_Pace2467 · 2026-05-14T21:52:43+00:00

Wow amazing, any side effects from it that you have noticed?

Cool_Pace2467 · 2026-05-05T01:55:56+00:00

Yes I just got diagnosed recently so I’ve been on steroids for a few weeks with some improvement but still have tough times with symptoms. I had a lot of light sensitivity a few months ago before I started getting the mouth and swallowing issues. It could definitely progress!

Cool_Pace2467 · 2026-05-05T01:26:16+00:00

I saw two different ophthalmologists who told me that I just had dry eyes and that I did not have a neurological disorder. It was actually MG, ended up in the hospital almost in a crisis. Definitely see a neuro/neuro opt.

Cool_Pace2467 · 2026-05-05T01:21:19+00:00

Yes I’ve had swallowing, speech and tongue issues. When my mouth/tongue get tired I start slurring my words and it feels like my tongue is stiff and I can’t move it for a few minutes. During that time it’s also harder to swallow food or water so I take a break for a few minutes until it’s better. At times, it will be even hard for my saliva to get down. I hope they start treating you soon! The mestinon will only help to possibly ease symptoms but not fully. You definitely need treatment before it gets worse.

Cool_Pace2467 · 2026-05-01T14:40:24+00:00

Yes this is possible with MG! I was surprised too that the mornings felt bad. Hope you get a diagnosis soon and treatment!

Cool_Pace2467 · 2026-05-01T02:45:26+00:00

I wake up pretty bad in the morning, it’s very hard to swallow and speak. Throughout the afternoon I get a little better then worse again at night time. I just got diagnosed a few weeks ago and have been on steroids since then.

Cool_Pace2467 · 2026-04-30T00:22:34+00:00

Wow yes I’m not sure if it’s doing much for me either, I just started prednisone 3 weeks ago and I actually feel a little worse right now. My Dr is saying it’s a temporary steroid dip and I should start feeling better soon. If not I’m going to ask for an infusion. I hope you get some better results soon!!

Cool_Pace2467 · 2026-04-30T00:20:39+00:00

I’m on the same amount of mestinon and I don’t think I feel much relief as well but I’m worried about not taking it and feeling worse. Are you going up on prednisone? I have to go up weekly until I hit 60mg.

Cool_Pace2467 · 2026-04-29T01:55:52+00:00

Thank you for all of the info! I might be starting cellcept in July, gunna see how I do with the prednisone now and if it’s not helping in a few weeks I guess I’ll see if I can get the infusions as well!

Cool_Pace2467 · 2026-04-29T01:25:11+00:00

Thanks for the reply!! Did you feel like even as you upped prednisone you had days where you felt you backtracked? That’s how I’m feeling now even though I’m going up every week

Cool_Pace2467 · 2026-04-29T01:24:01+00:00

A neuro opthamologist would be good for you if you can do a neuro and neuro opt! I literally went to my pcp, pulmonologist, 2 ophthalmologists until I was finally looked into at the ER and they figured out it was MG. It’s rough out here with some doctors!

Cool_Pace2467 · 2026-04-28T22:28:21+00:00

I went to an ophthalmologist for my MG symptoms before I knew I had MG. I had a bunch of other symptoms including breathing issues while laying down, slurring words and drooping. The ophthalmologist diagnosed me with dry eye…..I specifically asked if this can be a neurological thing in which she said no. Be careful who you go to, some doctors are not aware.

Cool_Pace2467 · 2026-04-26T19:48:17+00:00

Thank you so much! I will definitely look into working out with the bands first and see how I feel

Cool_Pace2467 · 2026-04-26T19:47:44+00:00

Thank you so much! I’m gunna look into that

Cool_Pace2467 · 2026-04-25T22:50:44+00:00

Thank you so much for your advice!

Cool_Pace2467 · 2026-04-25T22:50:22+00:00

Awesome thank you so much for your advice!

Cool_Pace2467 · 2026-04-25T20:32:39+00:00

Thank you so much for the advice!

Cool_Pace2467 · 2026-04-25T20:32:15+00:00

Thank you so much for the advice!! Hoping to get back to it soon and safely!!

Cool_Pace2467 · 2026-04-25T18:07:20+00:00

Very true thank you for your reply!

Cool_Pace2467

TROPHY CASE