Does anyone out there feel like there are sand bags on their arms and legs. I am so exhausted. The doctor won't put me on Prednisone because of my weight. He says I could get diabetes. Right now I am on Mesitionin and Imuran. I started it 2 weeks ago. I feel like poop. I could just stay in bed and not move all day. This is the worst its been.

Yes!Yes!Yes! I know EXACTLY what you mean! I used to feel that way all of the time! I have 3 small steps that lead to my front door, but fell on some occasins b/c I just could not lift my legs.....it was so scary!

THere were even days that I could not lift my head up.......b/4 all the meds and IV IG!!!!!

What other alternatives is your dr giving you? Sounds like you need a "pick me up"!

MY thoughts and prayers are with you! Hang in there, sweetie!

Big, big hugs!
Erin

Hi, Barbara. Erin is right, you should discuss IVIG with your doc. And I agree with him about the risks of Pred. It sounds like you need something in the short term to make you better like IVIG.

I hope you can get some relief from the Imuran soon; though it can take a long time to really kick in.

Annie

My arms don't feel heavy, but my legs sure do. They feel so heavy when I walk up stairs.

Yes, Yes, Yes... I thought it was just me because when I was Dx'ed i was told muscle heavyness was not part was MG, they sure have learned a lot in 18 years and thanks to all of you I have learned as well.

Hi Barbara,
Imuran may take several months (6 or more…) to be effective, thus as others suggested, you need something to help you in the meantime, IVIG or plasmapheresis.
There is also something else, an increase of your Mestinon intake. I presently take 3x60mg/d but 3 weeks ago, during our vacations in Sicily, the first 2 days were rather difficult: the mornings and afternoons visits plus the heat (July temperatures, they said…), so I took 60mg more: 7am-1pm-7pm and 11pm and the fatigue went away! I was even doing better than my wife…!
So talk also to your neuro about inscreasing Mestinon.
Maurice.

Hi Barbara,

I too remember that all too well and still get it on occasion when I'm not able to tolerate the mestinon. The worst time I had it almost on a daily basis was prior to the thymectomy in 02, so I had plasma pheresis which helped tremendously. Maybe you could talk with your neuro about IVIG or pheresis. Hope you're feeling better soon. Take care.

Hugs,
Pat

Another Yes here! I have Prednisone induced Diabetes. But they say it will go away, when I'm off of it. Been on for almost 5 years now. I was only suppose to be on Prednisone for about 6 months to a year.
I have a like-hate relationship with it. I hope he does something for you. It's not right to say, no to this, and then not give you an idea as to what he would like to do.

Love Lizzie

i was just started on mestinon 3 months ago it's those little things that i never thought of like i wear birkenstock sandals most of the year. the other day i was out at park watching grandson play ball ,wore sneaks because it was wet. then when i got home ,took them off i felt so much lighter on my feet. i can never figure out what is just me or mg!!!

This "sandbag" feeling describes exactly my symptoms when I tried to get them addressed early on...told the doc my arms & legs got so heavy I couldn't function & was so exhausted after doing seemingly nothing, it was scary...but as usual no-one could explain what was happening to cause this & my "exertional dypsnea"....took almost 3 yrs to get a dx, & now my neuro guy is back pedaling cuz all the antibody tests are negative, tho the repetitive EMG is decremental..the only incriminating factor...I do intend to send him the article by Dr Vincent on Abs...& I still can't walk to the barn & back without shortness of breath....oh well....hope you are doing better...keep the faith!!

Dottie