Sorry things aren't better. Cellcept takes months to work as does imuran. If they don't then it gets taken away.is plasmaphersis an option where you are?please say you use a cane at very least or rolling seated walker. Better than slamming your body/head to the ground.i was 60 when i started walker and it was difficult mentally. I use it at home all the time to save energy and cane or the store cart everywhere i go.if second opinion is feasible try a university hosp maybe. If things drash please go to er. Sometimes er docs have good ideas or referrals. Take care

At least ask about plasmapheresis and if your doctor won't listen, then get another one. Thee is also Rituxan that helps a lot of people.

You do need to be using a walker/cane/wheelchair so you don't end up adding more than mg to your list of problems.

Have you tried contacting MDA for a recommendation of an mg specialist?

Good luck to you.

Thanks for the support you guys!! The hospital he prefers to use doesn't have Plasmerphesis, so he hasn't made it an option. That's why I thought about going to Seattle or to Tacoma to the hospitals that have it as an option. Maybe it's what I need to try?

I don't have a walker or cane, guess I should look into buying one. It's so hard though, because I was sitting at the table eating breakfast, stood up to get more water and my legs gave out and before I knew it I was on the floor. No warning or anything, and I had been sitting so my legs hadn't been being used.

I've been on Cellcept since March. I do think that it is helping to stabilize things, it's just taking time.

What's the MDA? There aren't any MG specialists in my state or the surrounding states on the MG website. There are some in CA that I would travel to see, but I'm wondering if it's worth it?

Mda is muscular dystrophy assoc.org,they have resources of drs and equipment for loan. Have you checked out mgfa.org for dr list and/or support group by state?state groups have newletters online sometimes ?area drs. Any thing that allows you to do more is a good thing. I use walker in house for soooo many things but its too big to get in and out of suv.i sit on walker to load dishwasher,cook,use seat to reduce #of trips around house ,clear table etc. Have a good weekend

I understand what you are going through. I was diagnosed July 2015. I had the sudden chopping off of the legs and ending up on the floor. Once I was headed into my office early on in June 2015 and flipped backwards without warning. I rolled up under a car and was there for thirty minutes before I was rescued. Although I support a cane or walker it will not stop the sudden without warning falls. Trust me have fallen while using rolling walker. But I am on imuran 150mg daily, mestinon 90mg every three hours, etended release mestinon @ night and IVIG every three weeks in a two day sitting. I use a wheelchair or mobile scooter when out. I have not stabilized yet but I'm still believing God for my miracle. There are many options out there but mostly found at the university hospitals or Mayo clinic. My prayers for you as I know what you're going through. Oh by the way it does take a year for those immune suppressants to work. Just take it one day at a time.

Plasmapheresis can still be an option even at a small hospital. American Red Cross contracts with many hospitals across the country to help make this service available if the hospital does not have their own unit. Try contacting American Red Cross Apheresis unit for your local area and they can tell you which hospitals they are under contract with.
I would agree with going to the larger hospital. I had to do that because my disease Lems, even though similar in symptoms to mg is even rarer, and larger hospitals will have more experience with your disease and treatment.
I have to go to a teaching hospital three hours away to see a Lems specialist, but I also have a local neuro, who manages my treatment locally.

My legs used to give out on me unexpectedly, too. Don't know how I managed to not break anything.
But now I have a cane, especially for uneven terrain outside and use a rollator in the house if feeling weak.

Mg and Lems are diseases under the umbrella of MDA, Muscular Dystrophy Association. They have clinics throughout the country, usually in teaching hospitals. You can call or go online to find your local chapter and they will help with finding specialists in your disease and they offer a lot of other support, too.

I also use 90mg of time released mestinon every 6 hrs but usually not middle of nite and 30 or 60 mg reg mestinin every 5 hrs 40 mg pred daily need to get lower after 4 +yrs due to severe osteoporsis and rituxan every 6 months .no real side effects except severe sweating am.cane won't stop fal but it may reduce fall and alert people that you may need asistance.it is so complicated isn't it? Hope everyone had a good w/e. Thoughts with mgers affected on either coast by weather