I have a question... have any of you lost weight?

I am not liking this. When i was diagnosed with MG back in sept 2011 i was weighing 120 - 122 lbs (which has been my weight since i was 16)

When i started taking prednisone my weight shot up to almost 135 lbs.
After i stopped taking prednisone i was able to lose the weight and get back to my normal 120.

In the last month though i have noticed i've been losing weight, too much weight.

I am down to 105lbs and i am NOT trying to lose the weight...
Should i be worried?
I don't have an appt with my neuro til sept. 5th.

Yes, I've been very thin at times when my swallow was not so good. It's exhausting to eat which also cut my appetite.

If I were you, I'd try to get a couple of servings of higher calorie foods in daily. Nut butter, cheese, full fat dairy, an extra serving of protein would all be good choices. Also, make sure you are well hydrated. If you continue to lose weight even after that, it would be worth mentioning at your next appt.

Now go get a milkshake!

Are you taking Imuran? I lost 35 pounds on Imuran. Went off Imuran then started Cellcept and Prednisone gained back my 35 but we are now tapering the Prednisone and I'm losing weight again.
Mike

Sunshine -
I was diagnosed last November, 3 weeks after my first symptom. At that time I had lost close to 10 lbs in the previous year, without trying. It was enough to be concerning to me but wasn't to my doctor. From my diagnosis in November through my thymectomy in December to April/May I lost another 7-8 lbs. I was in a complete panic, convinced it only meant bad things. My neurologist, my primary care doctor, and my surgeon did not seem too concerned, which did nothing to relieve my fears. Since May I have slowly gained back about 5 lbs. I think my weight loss was a combination of 1. no reason, 2. my body reacting to my MG, 3. fear, 4. fear, 5. worry, 6. surgery and 7. stress about (a). getting MG, (b). having surgery and (c). worrying about losing weight.
My point is...and I do have one...it probably is your body's unique (snowflake) reaction to MG and all stress involved. I would, however, try to get an earlier appointment (easier said than done) so your fears can be allevied.

I am only taking mestinon.
I've been off prednisone since January.

My swallowing isn't an issue though. I eat A LOT which is why i am concerned. i try to eat as healthy as i can. i stay away from sodas and i drink about 3 or 4 bottles of water a day. I know to stay hydrated specially during this horrible summer in Florida.

My roommate and i usually eat the same food and he's a big boy now, and i am losing weight. (he hates me for it... haha)

Just today i've had 2 peanut butter sandwiches for breakfast,
for lunch i ate some leftover pasta and for dinner i am making pork chops!

I have lost some weight since I have been on mestinon. I am glad, and I wish that I would lose more. I am eating plenty. I suspect that the reason is that my muscles are contracting better now that I am on the mestinon. The muscle contractions use up energy. It it like exercise in a bottle.

You should call your doctor--if not your neurologist, your regular doctor. If you're eating sufficient calories and losing weight, you need to find out why. It's pretty common for people who have MG to also have thyroid problems (like Graves disease). If your thyroid is overactive, one of the symptoms is weight loss.

Abby

Hi Sunshine

I lost a lot of weight last year, and at that time I didn´t have bulbar involvement/thyroid problems/medication or stress issues to mask the causes of weight loss. I enjoyed eating 3 extra portions of everything when my trunk muscles could hold me up, and yet, I was getting skinnier and skinnier by the day. As a middle aged woman that is not the norm.

My theory about my own experience is that I could never get enough of what I really needed – and that was fuel!! I literally felt I was loosing weight just waving goodbye to my son on his way to school! It was like a very faulty car needing a whole tank of gasoline just to get to the end of my own driveway and then suddenly needing a refill tank before it could continue driving down the road.

Now, with milder myasthenic episodes I am burning calories at a more normal rate. So it did appear that in my case there was some sort of correlation between severity of myasthenia and metabolic rate.

Anyhow I agree you certainly should see a doctor for more investigation here.

Good Luck with everything

Anacrusis

Another thing that could be causing weight loss is the fact that mestinon moves the food through your digestive tract so much more quickly. Whatever is causing it, you need to get checked out by your doctor.