Myasthenia Gravis is a disease characterized with chronic fatigue and extreme weakness. Like most diseases Myasthenia Gravis is idiopathic meaning a disease that arise from an unknown cause. This is untrue Myasthenia Gravis and other diseases have a root cause and I don’t know about you but idiopathic sounds more like idiot to me. I’m not the smartest person in the world but I am sure not an idiot. Myasthenia Gravis is also an autoimmune and neuromuscular disorder. I have had Myasthenia Gravis for 13 years now and I started off with ocular MG only effecting the eye until it progressed to my entire body as generalized. The thing that bewildered me was that 7 years later after being diagnosed I begin to experience a myriad of symptoms that are also related to other diseases. Then I came across some information that linked Myasthenia Gravis to Candida Yeast Over Growth (Candida Albicans). At this point in my life my health deteriorated to the extent I was looking for any answer and willing to try anything. 2010 to 2013 I have been treating myself for Candida Yeast Over Growth and I have improved dramatically.

Hello there. I am so glad that I found this site and your post. I am 23years old and I have been diagnosed with MG since summer 2011. In August 2012 I had a thymectomy. I understand it's "supposed" to take 1yr or longer before you start to notice differences, but I do not want to rely soley on surgery and these strong meds that aren't even working that great. I don't think it can be healthy for the body to be on these meds so long and to be using IVIG's as maintenance as that appears to be what I may have to use it for for a little bit.

I agree that there is a cause for the MG and have been trying to do research myself. It's hard d/t time and the lack of actual research. I've found such possibilitieis as Immunodeficiencies of antibiodies such as IgA and also a general lack of nutrition. Would you be interested in posting/messaging me the links you found about this Candida Yeast Overgrowth? Could you please tell me more about it? I would love to research this as well and try anything possible. If I may ask, how are you treating it and what changes have you noticed??

Thank you so very much, any help/new research would be great.
-Samantha

Welcome Samantha. You have found a great place for help and support.

Another forum member directed me to an excellent document that was very helpful when I arrived here two weeks ago. It is available for free from the following link:

http://www.myasthenia.org/LinkClick....w%3d&tabid=125

The document is entitled Myasthenia Gravis: A Manual for the Health Care Provider.

It is published by the Myasthenia Gravis Foundations of America. It is in PDF format. You can read it online using a Web browser, download it and read it offline with an Acrobat Reader, or you can have it printed and bound. I had mine printed.

I found the section on treatment beginning on page 16 to be most helpful. You might also find the section on thymectomy beginning on page 18 interesting. It will not be long before you know more about MG than does your neurologist. Ask your neurologist if he has a copy. if not, print one up for him. Since MG strikes 1 in 10,000, even neurologists may not have great deal of experience with MG.

I'm so sorry this happened to you. As a woman you get MG much earlier in life then men and must deal with it for much longer periods of time. Yet another example where women get the short end of the stick in our society.

The good news is that younger people who have a thymectomy have a better chances for a more positive outcome. I learned this today in this very forum.

http://neurotalk.psychcentral.com/thread200436.html

-Mark-

Hi Mark!

Thank you very much. I've been on their website and done some research but I don't believe I've come across that pdf before. I will have to save it and check it out. Sadly, my neurologist isn't that active about finding reasons behind the mg or considering alternative methods, etc. But I think I'll make an introductory post and mention that a bit as well as introduce myself.

Thank you!

Find another neurologist who is.

Check out another thread from earlier today. I posted the text of a fax I sent my doctors:

http://neurotalk.psychcentral.com/thread200357.html

Knowledge is power. Thanks to the MGFA MG Manual I caught a mistake my neurologist made in my prescriptions involving Mestinon Timespan.

I was also on the MGFA web site and missed it too. I was even on the download page and didn't see the link. I can be blind as a bat sometimes. I was most grateful that another forum member brought it to my attention.

-Mark-

Very good point.

My homeopathic doc did refer me to a neurologist she works with. I was waiting to see what my current one was going to recommend before I sought out someone else. But we'll see. I move in about 8 months so I'll end up getting a new one anyways.

You are definitely right that knowledge is power and I read your fax. You're also right about how the docs work for us. I completely agree. I tried telling my doc that I would like a referral to speech/swallow therapy and she said that wouldn't help anything. Which is funny because they referred me to PT which follows the same exact concept: PT to help strengthen the major/minor muscle groups of the body.

Use it or lose it. Speech/swallow therapy does the same thing but focuses on a more refined area and it helps to strengthen those muscles; the MGFA even came out with a brochure about it in November. I don't know why they don't see that. So I'm trying to push for it despite the fact that they got me cleared for an IVIG (which is a shocker in itself b/c they don't usually go for that - - usually they just up the meds). But I'd rather look at the whole picture rather than just cover it up with treatment that's temporary. :/

Samantha,

Basically "what we have here is a failure to communicate." Can you site the reference?

Your neurologist's first choice might be right. I know we describe our symptoms as weak muscles, but they really are not. Our problem is that our bodies are putting out antibodies that interfere with the brain's communication with various voluntary muscles. Your muscles are good, but the commutation pathway is affected. See the section 2.2 of the MG Manual, Psychopathology of MG beginning on page 8. It's complicate so I just skimmed it.

One of our members asked her doctor if it was OK to go walking. He said no. She walked anyway. She told her doctor about her walking later. He said good.

-Mark-

Our problem is not weak muscles, but lack of communication to the muscles. On the other hand, any muscle that is not used will become weaker. It is very easy to get a snowball effect with the whole thing. I try to do all that I can. Some things I just can't do. Getting up from a low chair or the floor are huge challenges.

One thing that my doctor told me is not to take the whole swallowing issue lightly. If you feel like you can't swallow something, and you force yourself, it might go down into your lungs. I really don't want my last act on this earth to be an unsuccessful attempt at eating a hotdog.

A short term stint in speech therapy could be helpful to teach you how to swallow safely in the presence of weakness and how to use the strength that is there to your advantage. It will also address adaptations and ways to prepare your food and liquids to be more safe.

Speech therapy will not be about making your throat strong again. Your muscles are not weak, they just aren't getting the signal to work for you. I've had some impressive improvements during my journey where I could have an extremely weak swallow, to the point of everything running out of my nose one day and then 3 days later be eating anything with no difficulty whatsoever. That wasn't because I suddenly "worked out" my throat and made it strong, it was because the signals were getting through to the muscles and they were doing their jobs again!

Celeste,

I have not had anything that solid in well over a year. I had to find a different way to eat. I have my first meal of the day, around 4:30 p.m. I have a yogurt and a fruit smoothie fortified with a dietary supplement to make sure I get all the proper nutrients. I make them with a Vitamix. The emulsifying blenders can be used for so many things that make it easy to eat.

I have my main meal, sometime between 8:00 and 10:00 p.m. I make simple soups that are fast and easy. I also eat a lot of meat, fish, or poultry salads. I got a meat grinder and run the meat through it with it's course setting. I dress with olive oil and various spices. If I make beef or pork salads, I use olive oil and BBQ. sauce. One batch last two weeks.

I usually start with 1.25 pounds of meat. Although I could cook the meats myself, it is much easier to get it for the deli.

Meat Salads

• Chicken
• Beef
• Pork
• Ham
• Bumble Bee Spicy Thai Chili
• Tuna
• Smoked Salmon

I also get a tub of salsa and pulse it in the Vitamix. I run avocado through the grinder and mix with spices and olive oil. I like hums too.

When working I take a stainless steel Thermos with around four cups of soup. I use one of those Ziploc cup sized container, a Glade 1/2 cup container to hold the food. Last night's meal:

• 4 cups of soup
• 2/3 cup BBQ Beef
• 1/3 cup humus
• 1/2 cup salsa
• heaping table spoon of Philadelphia cheese

I do a few other things too. I'll start a thread on this later.

-Mark-