Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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jessicadrummond 03/28/2016

I was diagnosed with MG in Sept of 2015. I was doing really well on a low dose of prednisone (5 mg daily) and mestinon (60 mg 3 times a day). I had a thymectomy in Dec of 2015 in which I recovered really well and was living a pretty normal life. In February of 2016, I was hit with an illness and it seemed to screw with the MG. I ended up in the hospital and received 2 IVIG doses. Doctor also upped the prednisone to 20 mg daily and mestinon to 60 mg 4 times daily. I left feeling on top of the world and my life seemed to go back to normal for a week or two. Then, I was experiencing weakness again. My main weakness is my large muscles in my arms and legs. I would fall if I tried to walk. I would do well for a day or two and then I would be back to not doing well. I ended up back in the hospital this last week with arms/legs super weak again. This time, I received all 5 IVIG doses, and doc added Imuran to my list of meds. This time, I'm still weak after the IVIG. I feel as if I hadn't even had it done. I'm super weak again in my arms and legs. Trouble going to the bathroom. I'm a single mom of 4 kids, and work full time as a special education teacher and I feel like I can't do anything. Just getting the goodies out of the car to setup Easter baskets yesterday was hard. I'm wondering if I will have to go on disability and not work. Has anyone else experienced this sudden change in resistance to medicine? I'm wondering if the Imuran has changed the outcome? Thanks for any advice!

Joe-Fodor 03/29/2016

This sounds awful -- sometimes I wouldn't feel the effects of the IVIG for a day -- I was always tired the day after. The imuran won't start working for a while (6 months). I wouldn't go on disability, but you have a disability and have a right to accommodations under the American's With Disabilities Act. (You can get a handicapped thing for your car!) You are also on a tiny dose of prednisone--you can ask your Neuro if it's okay to double the dose (to 10 mg or more) and see if that helps. Take it easy and relax -- you sound like superwoman and might be pushing yourself too hard! ~joe

megan2626 03/29/2016

Oh man!!! How do you do it all?? I'm a sped teacher too, but no kids and it's hard!!! As for the IVIG, when I got the initial 5 day dose it really knocked me down. I didn't feel good afterwards for about 2 weeks. Then I started getting it monthly and it wasn't until about the 3rd month where I noticed a difference. It wasn't the superman juice for me that some people describe. It does help me though. You have to take time out to relax and rest somehow. I'm not sure if you have a state retirement service for teachers at your job, but I know at mine you can go on disability and still work somewhere else. It just means that you can't teach in any form.

annkemp 03/29/2016

It took about a year for me to improve. I used to be a special Ed teacher.
The meds take a long time to change your body.
I heard it described in this manner.....
The old cells need to get out of your body and healthy ones need to be made.

Barbel 03/29/2016

Bless your heart! I'm sorry that you are suffering. Rest is your best friend. Recovering after activity is needful, or we run ourselves down. Learning our own limitations is so hard. I have to pace myself based on how im feeling for the day. There is so much to do with 4 children. The laundry alone would be a challenge. Perhaps, you can assign them chores, or ask for help from a young person. It's amazing what energy it takes just to fold a load of towels. Right now, you need to take care of yourself.

Most of us snowflakes are over achievers. I don't put pressure on myself to do any more than I feel I can physically do for that day. I understand what you are going through.

Prednisone kicked in after six weeks for me, and imuran kicked in soon after that. Ivig has been miraculous for me. Although I am still limited in my activity. I work, and I have had to change jobs twice because the stress and physical activity level was too much for me.

Eating a high protein, no dairy, no gluten, no sugar diet really helps me feel better. Diet is not a cure , it's a coping measure for me. Also drinking a lot of water helps.

I wish I could just make it better for you! This group is great, and has taught me so many things. There are ways to survive!

I'll be thinking of you. Please stay in touch with us

xmas25 03/29/2016

I have to care for grandkids ages 6,4,3 alot including being b there at 7am ,do breakfast, finish lunches, potty teeth and in car by 740. But I'm home by 830 usually. God bless you moms. In evenings if I do p/u,dinner etc. I hire my nephew who's 23 and willing to occupy them for an hour. It does make a difference! Is the any possibility of this for you? 1 summer I had both girls under 2 for afternoons and hired sitter for 3 hrs . Don't know how old kids are but I hope they help with what they can. My son in law died in Sept unexpectedly and life has never stopped for my daughter. I just rest and do coloring, board games with them .they just know I don't do park or walking . Please know I'm thinking of you and hope it improves soon!!!!

jessicadrummond 04/01/2016

Thanks everyone for all the encouraging comments! I stopped taking the Imuran and am slowly regaining strength, so I think it was part of the problem. I had a similar problem with a generic prednisone while in the hospital. My body has an allergy to the fillers that they put in certain medicines, and I think that this particular Imuran did that to me. Neuro is trying me on Cellcept, and after tomorrow my school district is on spring break, so I have time to rest and recoup. Still recovering from the hospital stay last week. I am so grateful to all the advice you have shared, I find this disease to be so lonely and I finally feel like I have others who understand. Thank you!

whales86 04/03/2016

See how you feel after your week off but you might think about short term disability. If your school offers it. Just take another 1-2 wks off to get rest and let's your body catch up. Cellcept for me did kick in in just a couple of weeks to notice a little difference. Full effect was longer
Hang in there.

Rest is the most important thing we can do. Yes I know much harder said then done. But soon you will lean if you do 2-3 errands a day vz all if them in one day what a world difference it makes

Hang in there it's a HUGE adjustment you hv to make with this. I still struggle with it. I push my self and pay for it later

waynem 04/04/2016

I am not clear from your post whether you are continuing on IVIG since your illness in February? IVIG usually takes 2-5 days to work and effects last 4-6 weeks. Regular IVIG therapy to get you back on your feet is important. Illness or surgery can really throw a curve into your MG symptoms and can take months to regain control. You may require going on high dose prednisone for a time and then taper back to a maintenance dose that is effective for your ""new" normal.

MGOhio 04/05/2016

Welcome!

I'm so sorry you are having a rough time, but it will get better with time as you figure out your treatment sweet-spot (all of us are different, and at differing levels of disease progression).

It is HUGE that you got a diagnosis, and typically your demographic (young woman) responds well to the Thymectomy, but it takes time. The immunosuppressant's (pred, Imuran) ALSO take time.

You know yourself better than we do, but I would not go on disability quite yet. Most all of us stabilize some time after the Diagnosis, but you have to keep on your Neuro and give them frequent updates.

You alone are your best advocate ; I know it's extremely tiring though, especially with children and work. I am hoping you have a support network in place, with some family members that can help out until you plateau.

Keep Us Posted. Take Care of yourself :)

jessicadrummond 04/06/2016

Wayne, I will now be getting regular IVIG in my home. I just had a dose at the end of March, but since I started Imuran and had an allergic reaction, I'm not feeling like the IVIG has helped this time. I am hoping by the time that I will receive my next dose (end of April) that my body has leveled out from the Cellcept. I'm currently taking the Cellcept, Prednisone and Pyrodistigmine. I'm hopeful that since I had a thymectomy I will begin to see results. Does anyone here take any supplements/vitamins to help with MG? I'm curious what helps.

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