NeuroTalk Support Groups

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

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

- - New to site (https://www.neurotalk.org/myasthenia-gravis/184626-site.html)

Thanks for all the suggestions Im not sure what u mean am I musk Im not 100% sure what kind I have as I could not see a neuro for I could not find one who accepted my insurance till December so every time something went wrong just ended up in the hospital. I just go to a regular neuro he is not an mg specialist would that be something that I should try to find? Not sure what is offered in Orlando, Fl area. I seem Especially when I get to hot my voice slurs real bad and just real frustrated. Didn't expect to be back living with my mom cause I couldn't take care of myself and my daughter. My husband couldn't deal with it and disappeared but that is another story lol. Just trying to deal. Thanks everyone.
Tabitha

Quote:

Originally Posted by AnnieB3 (Post 961307)

Hi, tk3891. Do you have a less mathematical name? ;) Welcome!

I'm sorry you're going through so much. MG is NOT fun.

You might need some advice on changing the Mestinon dose or frequency. More isn't always better with Mestinon. Some people do better with a more consistent dose, like every 3 hours. A higher dose isn't always better but talk to your neuro about trying 90 mg. later in the day to see if it helps. Don't make changes without that talk though! And some people do well on Mestinon Timespan at night, in order to get a better night's sleep. My MG wakes me up literally every 3 hours. It's beyond annoying, though I do appreciate that the drug exists.

I wonder if you are so bad right now that you might need a higher dose of IVIG or more consistent infusions.

Pred can be very hard to get off of. It can do a lot of damage to the body on a long-term basis too. Sometimes neuros do a "priming" dose of Solu-Medrol (it's IV steroids) when an MGer is worse but it might not be a good idea since you could get worse temporarily. Just a thought.

Due to the cataracts, it might be a good idea to get your vitamin B12 checked. Yeah, it could be "just" the steroids but a deficiency can contribute to that too.

Are you on Calcium/Magnesium/Vitamin D? Have you had your Vitamin D levels checked? B12 and D are common deficiencies.

Don't forget about regular thyroid checks too. Many people with MG have some type of thyroid issue.

I hope you and your neuro find the right treatment balance that works for you. I hope your daughter is doing well. It can be hard having MG and being a Mom but many people with MG find ways to do it well.

Annie

I had the cataracts removed immediately as I could not see. My daughter is doing great ty

Agreed...you may need a higher dose of IVIG. If you aren't getting enough you won't see the benefit. Do you know how many grams of it you got? How many consecutive days was it for? Was it a five day loading dose, five straight days? If not, how many days and how spaced out?

I go every two weeks and get 30 grams a day for two days. Without it, I go into crisis really quickly.

Back to doing no good my neuro took me off prednisone and put me on 180mg of timespan mestonin with 2 other does of 60 mg mestonin. Just feel so exhausted and week just want my doctor to give me some more info and he seems to know nothing tried getting a new doctor and having trouble with that. I really know nothing about what I have and it frustrates me. Trying to get in contact with a local support group now. Hoping to get some help there. Have to go back to neuro this Friday for some reason he thinks he only needs to see me every 4 months makes me very mad. Just tired and venting Florida Health Care is no good.

Tabitha

I would try a large teaching hospital where they see MG all the time. My doctor is a 3 hour round trip but specializing in MG and I think it is worth traveling that
far. I found him through an internet search.

There are other treatments like plasmaphoresis and numerous non-steroid immunosuppresants they can try.

Good luck
kathie

Did they do a CT scan of your thymus? They often will remove an enlarged thymus and most people find improvement of symptoms.

kathie

Quote:

Originally Posted by cait24 (Post 972657)

Did they do a CT scan of your thymus? They often will remove an enlarged thymus and most people find improvement of symptoms.

kathie

Yes they did but they did not say anything about removing it so im guessing that maybe it wasn't a good option for me

St. Petersburg is a couple of hours from Orlando but one of the best MG experts/MDA Directors is there. Dr. Allan Weiss. 727-820-7701

It might be worth a consult. If you go, bring your CT films/report with you too.

Your doctor took you off of Pred? How long had you been on it and what dose?!!! Taking someone off of it too quickly can result in an adrenal crisis! OMG.

Please do consider seeing Dr. Weiss for a 2nd opinion. He is amazing.

I hope you will get the care you need soon. And get your B12 checked anyway!

:hug:
Annie