Hi All-

First, please forgive what may seem as short or terse tones in either my questions or responses. I two finger type so I tend to keep things short and to the point. Takes WAY too long for flowery phrases. No offense EVER, EVER intended.

I'm a 56 yr old male diagnosed 3 mos ago with MG. Had the bulbar form-just woke up one morning with tongue, jaw, palate, facial, etc. muscle weakness- bad. The couldn't lift eyebrows, choke on your own saliva, couldn't eat type of bad. Had a positive antibody test.

Questions-

1- Anyone else here with this form of MG?

2- Anyone here used Huperzine-A instead of mestinon to control their symptoms?

3- Has anyone here ever had - or know first hand of anyone - having had ANY form of MG go away on its own WITHOUT drug(steroids, etc.) or surgical intervention?

4- Is there anyone here who started out with the bulbar form that eventually spread to generalized muscle weakness? Or did it remain pretty much in the facial/head area?

Just looking for some common ground and answers that my neuro was unable to confidently supply. Neuro is good- no probs there. Just doesn't know every answer to every question.

Aries51

Hi Aries and welcome to NT.

I am sure there are plenty of folks here who can help you with your questions.

If you haven't found it yet, the link to Myasthenia Gravis is
http://neurotalk.psychcentral.com/forum77.html

Cheers,

p.s. Who knew it was possible to type with more than two fingers? I learn something everyday.

Welcome to the neurotalk family. Im sure there will be lots of people here that will be able to help answer your questions.

I will answer what I can.

I came home from work one day after feeling rough for about a week to find my eyebrow had dropped and my eye had closed. Initially that was the only symptom I had. Over the next few months I developed weak arms and legs. I had to wait around 9 months for a diagnosis (12 months after that the diagnosis was removed, its a long long story LOL). I saw a neurologist at that point who diagnosed ocular myasthenia.I was given mestinon.

Over the space of 7 months I developed more problems and mestinon alone wasn't helping an awful lot. My arms became so weak couldn't hold the hairdryer or change a duvet. Legs became weak after standing for 10mins. In June 2008 developed breathing problems and was hospitalised. I couldn't walk at this point. I was put on steroids and within three days I was feeling fantastic. But the effects soon wore off.

As I was now not having much response to steroids and mestinon I was sent for a second opinion and that hospital decided I had ME not MG. I was taken off the steroids (tapering slowly). As soon as I reduced the steroids my symptoms became much worse. I had double vision, choked on own saliva, had bouts of not being able to swallow. Strength reduced in arms and legs.

I still take mestinon, but no steroids. I use oxygen at home and now I can not support myself sitting up in a chair for longer than about an hour. Im still waiting for a diagnosis.

So as you see, I started at the head and then my symptoms moved down. I think only occular MG ( affects eyes) that hasn't become generalised after 3 years is the only one where symptoms dont spread. Occular MG should not be diagnosed unless patient has gone 3 years without symptoms progressing.

Ive not heard of anyone who has got better that hasn't been on drugs. People do go into remission with MG and it can be spontaneous, thats what all of us want.

Im sure that other peoples posts will make more sense than mine! I shouldn't post when Im this wacked.

I hope this helps

Rach

Welcome!

I'm glad you found neurotalk - - great place with caring, knowledgeable folks who have helped me alot.

My MG is very mild compared to many on this site. I went in search of a diagnosis for a right arm that could not seem to handle activity -- sometimes dumb things like stirring cookie dough or brushing teeth. Found myself compensating by changing hands to do things.

Legs started getting heavy and filling with some fluid - but doc said it was lymphedema. Activities (like my sports activity and 2 mile per day walks were getting impossible). But I kept pushing myself - getting more and more frustrated!

Once diagnosed, it turned out that it had actually started as mild ptosis on my right side and slowly progressed to arms and legs. But because it was mild, the symptoms I focused on were the ones that kept me from diong my activites (the right arm). I y never really noticed my face until I started Mestinon. My hubby calls it my 'instant face lift'. (he'll say 'you need a facelift' when he sees I need a Mestinon boost!!)

I am only on Mestinon and it is working. The swelling in legs is gone. Neuro said it's because the mestinon helps strengthen the muscles so they can now support my lymph system properly. (I just glad it's gone!)

I have no thymoma, am sero neg, and barely failed a SFEMG. Neuro says spontaneous remission is unlikely (very rare) and progression is possible - - but there is no scientific way to predict - only time will tell.

Taking good care of yourself (proper rest, especially good nutrition - with B12 supplements, reduced stress, and sensible activity) helps a lot. But it is a 'new normal' with no guarentees unfortunately.

Once again welcome!
Sue

Hi all-

And thanks rach73 and suev for your responses. I had a lot I wanted to say about how I got to where I am now and why I made the decisions I did but it was taking too long and the surface had just been scratched. I wish I could type!

The gist is that I have been to two neuros and based on the physical manifestations and the blood test results they both have diagnosed MG. I did not get the fiber test done. That would have required another day off work and a 200 mile+ trip. Figured it wasn't necessary or worth it as both neuros were confident in their diagnosis. Both neuros prescribed mestinon as the first line of treatment.

I had done massive amounts of reading and research on the web before I had gotten a confirmed diagnosis. I had already decided that if I had MG I wasn't going to take the mestinon. My innocent belief was that a set of circumstances caused this condition, therefore a reversal or correction of those circumstances could eliminate this condition. I was not going to treat the symptoms I was going to go after the cause. Yeah great. What was the cause? Theories of overactive immune sys, underactive immune sys, and the immune sys out of balance between the thyroid and the thymus all had their proponents and all sounded good. To this day I'm not sure who's right.

C*** - this is taking forever to type and I'm rambling. Look, what I am trying to say is that in the three months since my disease started I have eliminated 95% of my symptoms and problems with dietary changes and nutritional supplementation. And I am still improving. Even though I got the prescriptions filled I never took any mestinon nor was there any steroid treatment. I have had a thymus scan but I don't know the results yet.

I HAVE NOTHING TO SELL. THIS IS NOT A SCAM. I only wish to pass on what I have done in the hopes that it may help others. All I have done is use the knowledge of others who have gone before and do what seems to work. And thank God for the internet.

In the interest of saving time I will post a link that encompasses most of what my self treatment consists of.


*edit* If after reading the info on this page anyone wants to know more, I will be glad to answer any and all questions the best I can.

Aries51

Hi Aries

sorry about the edits but we do have a strict rule re newbies posting redirects to other websites as this keeps the forums spam free. So that is why you were not able to post a link yet

even tho yours may be a legit site, we ask that you wait until your membership status is at the level where you are permitted to post links, otherwise your posts will keep getting flagged.

thanks

Chemar-

Sorry about that! No ulterior motives here!

Just trying to help with info that has helped me.

If you wish I'll send the link to you and let you check it out first.

After experimenting on myself and getting such positive results so far I just wanted to let others know that it MAY be possible to minimize or eliminate this disease.

Aries51

thanks for understanding

best just wait till you have the required # posts for linking. As long as the site is not for your commercial gain and does not have content that violates our guidelines, then it should be fine. you are welcome to send it to me via PM if you would like me to check to be sure it is ok for you

the software is programmed to prevent links till you have reached membership status, and we prefer not to override or make exceptions just to keep it fair for all

thanks and welcome...I realize sometimes the rules may seem rigid, but it is one of the reasons we are able to maintain spam/troll free and peaceful support forums here

Wecome Aries!

I have the same type of MG as you. Mine manifests itself in my tongue, palate, pharyngeal and facial muscles. I have don't really have any ocular weakness. I also have chest weakness.

I have heard of Huperzine. It's a Chinese herb, right? I was very interested in it, but I have no idea where to buy it, and I worry about the safety of it.

I'm very interested in what you're doing to eliminate your symptoms. From what I read about that herb, it seems to work very well.

I also have weakness/stiffness in my hands, jaw and forearms, but I'm pretty sure that's being caused by something else which is being investigated.

I had a thymoma too, just to give a more complete picture.

Ttys!

Aries, Hi and welcome.

I believe it is possible to make the immune system happy and lessen any disease. I do not believe it is possible to change a person's genetic makeup (yet) to the point of getting rid of the disease. Celiac disease is about the only one where all the symptoms can be gotten rid of by not eating gluten. The genetics of the disease are still there though.

They, doctors, really only classify MG as ocular MG and generalized MG. Once it goes past only the eye muscles, it is considered generalized MG. That sounds like what you have. You may not even notice yet that arms or legs are weak. It's easy to not notice things that come on so slowly. A person just gets used to it.

I've never tried Huperzine-A. Until it has gone through stricter regulation, I won't either. Why? Because it can make MG much worse if we don't know what the strength is! A person can get too much acetylcholine and end up in what's called a cholinergic crisis. Not fun. It's where you are very weak and cannot breathe well due to weak chest wall muscles.

I'm sorry you are having such trouble. MG is not fun. I hope you will continue with the neurologist who follows your care.

Nicky, Here you go. I worry about not only safety but dosing, overdosing, etc.

http://www.iherb.com/Search?kw=huperzine%20a

iherb is a great company. I have gotten my supplements there for 10 years. All brands are not created equally though!

Mestinon is very useful. I am one who does not have any side effects of it. It does help with symptoms. Could it hurt to try it?

Aries, Please do beware of people who say that they can "cure" a disease. They probably are trying to sell you something. I'm all for alternative medicine, as long as my primary doctor is in the loop. 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.

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

Annie

www.myasthenia.org
www.mdausa.org