Hi there.

I wonder if anyone tried unconventional treatments for their MG.
I've tried so many drugs normally prescribed for MG, I guess I've tried them all (not sure though). Now I want to try something different.

For example, have you tried drugs normally used yo treat MS or something alike? Pills which give you energy or whatever.

So far I've used (or still use): mestinon, mestinon retard, ephedrine, prednisone, methotrexate, azathioprine, mycophenolate mofetil, cyclosporine, 3,4 dap, plasmapheresis, ivig, ventolin.

I'm utterly exhausted, and hoping there's a pill to help me get more energy and strength and other nice things to you know... help me get out of bed and stuff.

Greetings

Hey, Ravenclaw. I know, you've been through a LOT!

Do they check your blood levels periodically, to make sure you aren't anemic, have any deficiencies, etc.? Have they checked your thyroid lately? That can change over time.

I don't use "alternative" therapies, per se. I do as much as I can to make my immune system as happy as possible though. Sleep well, nap if necessary, eat whole, organic foods, drink lots of water, take sensible supplements, laugh, get fresh air, do something I enjoy, get in as much "exercise" as possible within reason, meditate, stay the heck away from germs as much as I can, etc.

Have you been checked out for any sleep abnormalities or apnea? Have they checked what your O2 is while you're sleeping? Some people don't get deep enough into sleep, and a BiPap can help with that, too.

Anyone else have any suggestions?

I'm sorry things aren't going as well as they could. I hope you'll find relief soon.

Annie

Hi Ravenclaw, I'm new here and to the MG disease. However in my explorations, I did try Low-dose naltrexone, didn't seem to help, BUT each person is different I guess. A lot of MS folks swear by it.

Dan

Hi Annie! Yeah, my blood is checked at least once every 2 months. Thyroid and glucoses (and vit B12 and D) are also checked regularly.
Thanks for your advice.

Hi Dan, thank you. I've read about that, but as far as I can understand, you cannot take it whilst on prednison >10 mg a day. Not sure though...

I have been diagnosed with MS for over 15 yrs and MG for about five. My Dr.s researched for over a year and are now treating me off label with Rituximab for both diseases. I hardly ever have to take my Mestinon at all, about a half a pill every few days. Previously, I took two every 4 to 6 hours. For the last eight months, Rituximab is the only prescription I take, and has been amazing. I am Musk positive.
Jen

Ravenclaw, How about caffeine perhaps from tea? Coffee seems to dehydrate more than tea. Tea is all natural and tastes pretty good. Green tea has less caffeine than black but some people say is has other benefits.

As an expert in Coffee, Tea and Chocolate, I would say that Green Tea does not have significantly more caffeine than Black.

Tea has more caffeine (per gram) than coffee! But all of this depends on how you prepare and drink your caffeine.

Caffeine is a mild Acetylcholinesterase inhibitor. If Mestinon does not work, then a milder version is unlikely to work, and brewing caffeine, varies and can give you wildly varying dosage.

I drink a whole lot of tea (both herbak and green/black) I love it! Coffee too. It's the only thing I drink.

I do get this kind of 'caffeïne kick', but it only lasts for a very short while. And not even remotely effective as a few mg mestinon. (Considering that doesn't do much for me either....)
And I suppose I do need a good strong cup every half hour to be of any real help. My heartrate is messed up already as it is

However, this got me thinking; there are some pills that makes you awake and stuff, they give it to narcoleptic people. Maybe that is something worth trying.
So, in short, I'm looking for stuff to try the way I'm already using ephedrine. Symptomatic treatment of extreme fatigue and stupid ragdoll muscles. It annoys the hell out of me to be sooooooo tired and weak! Really, I'm willing to try all kinds of weird, unconvetional medications. Of course, I can always "learn to love the little things in life, like birds and sunshine" and sleep 20h a day, but I find I get evil to be this extremely bedridden at such young age. Stupid birds. Stupid sunshine!

About rituximab; they went over this with me, but I was told it wasn't an option, er....something about a latent virus? I'm not sure, I have to look it up in my records.