DeliaDee, have you recently been exposed to any pesticides? Has your house been treated for termites or other bugs? Do you have pets inside your house that you treat regularly for fleas, ticks, etc.? Have you been exposed to some OTHER chemicals (or OVER-exposed) within the past year or two?

No. I tend not to get exposed to too many chemicals if I can help it. Even my shampoo and shower gel is organic. In fact, all of the cleansing agents I use are organic. Heck, the bug spray I use is organic. What can I say? I'm just a tree-hugging, organic, vegetarian hippie-girl. When I have a cold, I use essential oils; when my knee bothers me, I use acupuncture and massage - that sort of thing. I work out of my home so that's not a problem either. It would be easier if I could point at a drug or a chemical in my house and say "Ah ha!" but alas no.

That is GOOD -- being careful about chemicals -- what you put into your body -- and around your house!! You NEED to live this way -- I do, TOO -- for the sake of MG, allergies, and chemical sensitivities.

Mestinon is "like" a pesticide -- I was sort of hoping that you were in "overload" -- that you were already getting "some" from another source. I overdosed one time when I petted a goat at a zoo that had been treated with one of those "pour it down the back" things to keep flys away (no one had POSTED this bit of info!!!). I had to leave in a wheelchair.

Wow, that's horrific! It's so scary when you think about how every little thing affects every other little thing. Ever since this mess started with me, it's become ever clearer that our chemical-laden, over-medicated, fake-food way of life is probably the reason the rate of autoimmune is at an all-time high. I've been organic for years simply because I feel that, if you care for the earth at all, it's the only way to do live. But there's so much going on in the air and water and land that you can't protect yourself from everything no matter how green you try to live. You proved that by petting that goat!

If that puffiness of the lips and tongues continue, you need to get some help! Some drug stores deliver, as do some grocery stores. PLEASE don't wait. I went from your symptoms to full blown severe allergic reaction with hives from head to toe and an inability to breathe many years ago. It's dangerous!!! I hope you'll be okay.

Someone can have a side effect of Mestinon like increased sweating, saliva, etc. You can have overdose symptoms, which it sounds like you may be having, that include increased weakness (and paralysis). Or you can have an allergic reaction to Mestinon, which you may be having too.

When they gave Mestinon to the Gulf War vets, they could not tolerate Mestinon (to keep Sarin gas out of the neuromuscular junction). Why? Because they have a normal amount of acetylcholine. Anyone with a normal amount of acetylcholine would have that reaction. No amount of food taken with it will stop those symptoms. You have to wait until the drug wears off. Or take Benadryl.

And neurologists (I saw your post below, Sue) don't often read all the info about drugs. They can't be bothered.

Sorry guys, but I'm being a downer again. DeliaDee has to have a definitive diagnosis before she even thinks about all these drugs and she hasn't gotten that yet.

Hi DeliaDee,

welcome to the Neuro Talk,

Whew, I checked in yesterday and there was 2 posts I think, then my computer shut down!!!!
I have read, or tried to read all the post here, my brains in a bit of a " I don't feel like concentrating thanks very much" kind of mood, so I might have missed what Iam about to post about.

Has anyone said anything about taking mestinon with food, if I take it on an empty stomach I get very very sick. All the dr's and nurses insist it be taken on an empty stomach, I guess they've never taken it.

Even if is with a small amount of food, just to line the stomach, it helps.

Like I said, I hope I havn't made an idiot of myself, and just repeated what someone has already said!!!
Kate

Kate,
My instructions from pharmacy says to take Mestinon with food to prevent stomach upset. Neuro never said one way or the other. Crazy for such opposite info on same drug.
Sue

Are you taking the name-brand or generic? It "might" make a difference. They may be using different binders -- the inactive ingredients that "hold" the medicine into the pill form.

Some MGers can only take the syrup form. You might ask if you can try.

Mestinon doesn't work for everyone -- BUT, you DO want to see if you CAN get it to work for you. Even with the somewhat bothersome side effects (that DO tend to subside with time), it is the LEAST damaging of the treatments, in my opinion.

Prednisone "might" help -- but, it can do some major damage to other body systems. It is the "good, bad" drug. Osteoporosis, diabetes, cataracts -- just to name a few of the likely side effects.

Cellcept, Immuran, Sandimmune -- other immune suppressants -- all carry the "possibilities" of cancer or organ damage or...........and there is no guarantee that they will even work!!

Plasmapheresis and IVIG carry their own risks........but, you may eventually need these anyway.

In short, Mestinon can be "uncomfortable" in the beginning -- HECK, it is a pain in the BUTT -- literally!!! You spend a LOT of time in the POTTY, at first!! But, if you can make a go of it, compared to the OTHER treatments, it really is not so bad.

Sorry to be so blunt, DeliaDee. The opinions expressed here are MY OWN -- and may or may not be the same as ALL other MGers. We are "snowflakes" -- different symptoms -- different reactions to meds -- and different approaches to the disorder we call "the beast".