Hi Nicknerd-

Yes our MG affected areas sound exactly the same. Don't know about you but I lost 15 pounds in the first two weeks because I couldn't eat. Didn't hurt to lose it though. Had enough to spare! I've even gained a tad back cuz it's now easy to overeat again.

Yes Huperzine-A is derived from a chinese club moss. It is also a ACE inhibitor the same as mestinon. However it appears to primarily target the receptors in the brain with very little left for motor controls when taken orally. That's why it's being used mostly in alzheimers and other mental dementia trials. I did find a source that said they got promising results using it for MG but that it was being injected intramuscularly and at larger doses than what was used in brain studies.

I was using it orally at 100mcg per day total split into two 50mcg doses-one in morning, one in evening. It seemed to help but not in the rapid way people have said mestinon works. I never took the mestinon so I can't compare myself. It's almost as if it would take a day or so of using it before I noticed a change. Also it never completely eliminated the symptoms but did seem to mitigate them somewhat. That's why I was asking if anyone else had used it. To see if they had similar results. Believe it or not though, I did notice a bit more mental clarity/sharpness after starting its use. No negative side affects noticed whatsoever while I was using it.

I stopped taking it a bit over two weeks ago to see if my symptoms would get worse when stopped. It did seem as if I was worse for the next 2-3 days. But again, not drastically.

The kind I used was purchased at GNC. Don't know if they are in Canada or even what your laws are concerning supplements. It's available for sale on the internet. Just punch Huperzine A in google and stand back.


More info in later installments. I will eventually get it all out. It took me almost an hour just to do this much! Pathetic, I know..........

Aries51

Without getting into the MG aspects here....I'd like to add that
Huperzine A is NOT an ACE inhibitor. This abbreviation is for angiotensin converting enzyme inhibitor...blood pressure drugs.

Huperzine IS an acetylcholine esterase inhibitor. Using "ACE" can be confusing with the drug family.

Mrs. D, I think that typing with two fingers can easily make AChE be ACE! ;) Good to clarify that though.

Huperzine-A is a cholinesterase inhibitor. Acetylcholinesterase is an enzyme whose job is to go and "eat up" acetylcholine after it's done its job. What Mestinon, and supposedly Huperzine-A, do is to inhibit that enzyme so that we get more acetylcholine.

AChE: Acetylcholinesterase
AChR: Acetylcholine Receptor Antibody
ACE: Ace inhibitor, is actually relatively contraindicated in MG!

Do you think they can make these abbreviations even harder to differentiate?!

The nightshade foods (potato, tomato, eggplant, peppers, nicotine) and caffeine are also "natural" cholinesterase inhibitors.

Please be careful with going on and off meds, even if they are over-the-counter ones. You could go into an MG crisis. And stay away from heat, it can make MG worse.

Keep asking questions, reading and typing! :cool:

Annie

Annie,

I know you have said this before but it just hit me......nicotine. I never noticed my symptoms until I quit smoking cold turkey. With my penchant for Italian cooking (tomatoes), pots of coffee daily, and the nicotine habit; I'll bet I was self medicating to a degree for years and never knew it!!

And recently realized, I don't crave non-stop coffee anymore. Fix a cup, let it get cold and throw it out. Now that NEVER would have happened before Mestinon!!

Crazy body / mind connections!!
Sue

Sue- Same here! I've been smoking for a long time, and I have quit many times. Whenever I would 'quit' (for two weeks or so), I would notice an increase in 'heavyness.' Everything else felt better, but my body would feel very heavy. Weird!

Hi All-

mrsD- Sorry for the typo. I reread all I peck for things like that but obviously don't catch all.

AnnieB3- Thanks for the backup!

My neurologist defined mine as being the bulbar form of MG and I did find it mentioned as such in other references on the net. It was also said that people with this form have an 85%+ chance of it developing into the generalized form of MG. That led me to believe it was a different manifestation/classification than the general. Doesn't much matter though- ya either got it or ya don't!


I wasn't a bit afraid of trying the huperzine. I knew what to look for if an overdosing occured. The alzheimers trials were using 200 mcg orally per day and the MG trials were using 400mcg per day injected. I felt plenty safe at trying 100mcg orally per day.

I'm NOT having so much trouble with my MG. That's been the point of my posts. I am almost completely symptom free in less than three months of proactive, consistent self treatment. Granted, it's not over 'til I'm dead. Tomorrow I could have a major relapse and be back to ground zero or worse. But I doubt it. That's why I asked- has anyone ever gotten better by doing nothing? If not then I must be doing SOMETHING right.....even if I'm not 100% sure what it is!

Would it have hurt for me to have tried the mestinon? No probably not. I did have it on hand if all else failed. But it was not my choice to treat symptoms but rather to try to go after the cause. Honestly, I don't know the exact cause and probably never will. But I can tell you that either by accident or design what I'm doing does work. And if a disease is eliminated from the body and never returns, is that not a cure?

AnnieB3 says:
"And I believe that if you sleep enough, get stress out of your life, deal with any traumas, eat whole/organic foods, etc. that you can make your immune system healthier."

AnnieB3 I could not agree with you more!!! That and some vitamin and mineral supplementation is basically all I am doing. Give the body what it needs and it will heal itself. It just takes time.

"I hope you can find what works for you and your MG."

Thanks - I think I have. Hope so anyway!

Oh and Annie- I live in S.East Arizona. Desert. Can't get away from the heat. Strangely though, the heat never made my symptoms worse. Many a time I even felt better after heat and sweating, almost as if I were eliminating something negative through the pores. Thoughts?

Aries51

In other areas... ALA means alpha linolenic acid (an Omega-3), and ALA is abbreviated for alpha lipoic acid. This also causes much confusion at times. It is just that medical terms are complex and hard to type out, spell etc.
You should see medical records... all the abbreviations there!
Lucky that more mistakes don't happen there.

I am glad you understand. I just wanted to clarify. That's all.

A disease can be put into remission but, no, I don't believe it is "cured" at that point. Even people with cancer can go into remission but can have the cancer come back. It's the genetic (DNA/RNA) "kinks" that are still there. Until they figure out how to get rid of or make that all better, we are stuck with the disease state in our body.

If there was a cure for MG, I'd be the happiest person on earth (along with everyone else with MG). Until then, I'll have to settle for doing the best I can with what I'm given.

Aries, I would still be cautious about the heat. Yes, we get rid of toxins through sweating but who knows when that heat could make you worse.

I know, Mrs. D., even drug names confuse people. At least the FDA is "trying" to keep that from getting out of control.

Annie

You want to know what REALLY bothers ME?

The product Kaopectate NOW is really pepto bismol with a new name.
http://en.wikipedia.org/wiki/Kaopectate

The FDA required Kaolin (clay) suspension to have new drug applications since it was Grandfathered into approval. Pfizer who had just purchased UpJohn Pharmacia, decided not to spend that money and sold the "name" to a generic house. This company is marketing Kaopectate with the same ingredients as Pepto.
This is a huge mess...the FDA allows it.... since the ingredients in Pepto are not safe in children, or for patients taking blood thinning drugs.

The name Kaopectate has been associated with Kaolin clay for decades, and now professionals are prescribing it for patients thinking it is the same and it is not. An analogous situation would be if Tylenol took the acetaminophen out and put aspirin in it and still called it Tylenol!

And what is really awful? The old stocks of Kaopectate were allowed to be sold off, and in 2004-2005 There were TWO Kaopectates on the shelf in many stores...with different formulas! Now how can this be safe? Logical? NOPE.

Mrs. D., I had no idea about this. How horrid indeed. I don't have a lot of respect for the FDA. That's why I put the word "trying" in quotes. We all need to be very careful about what we put in our bodies and to read ALL ingredient statements! Thanks.

Annie