Introducing myself and branching out for help
 

Hi there. :)


My name is Samantha, I'm 23 and I was diagnosed with MG in 2011. :/ For a quick recap on my course with this: I was placed on Prednisone and Mestinon, had my first MG crisis (with breathing) in summer 2012, had a thymectomy in summer 2013, had a second crisis (this time with swallowing) in december 2013. I'm doing okay now, as I generally am, but have noticed that my speech has declined more over the last week so my neurologist got me cleared for an outpatient IVIG this coming Monday...

I'm just curious about a few things now. I have tried to do my own research regarding MG, it's potential causes, alternative treatment etc. It's hard to do it all on your own and my neurologist refuses to look into any of this - - his bedside manners are okay at best. I do try to see a homeopathic MD and she promotes exercising and basically a gluten free diet but it's hard to get to the gym with the busy schedule and it's so expensive to eat healthy! So frustrating.

I guess I'm hoping to meet fellow peers who struggle like I do and who know what it's like. I haven't met anyone who has what I have. My days consist of work and school and by the time the day is done, I'm pooped and have to try to get 8hrs of sleep every night; otherwise this semester would be the death of me. :/

Anyways, I've read that potential causes could be:

a) lack of proper nutrition: This could attribute and the body just may not be able to break down certain complex sugars and things in the body. Which would be why a gluten/wheat free diet would be best. The few times I've been able to pull this off, I have noticed feeling a bit better. Like, I KNOW, that soda has adverse effects on me b/c every time I drink it, my symptoms are worse for the next 24hrs; same with coffee. So I stopped drinking both. Does anyone else notice this? Do you notice any relation to what you eat and how it makes you feel? I'm trying to start a journal to keep track.

b) IgA deficient: I've also found that the condition could be related to being deficient in certain antibodies, most likely the IgA antibody. The IViG supplies the IgG antibody and a smaller amount of the IgA. I need to do more research about IgA deficiency but it is a Primary Immunodeficiency Disease and research has shown a potential link between the two. It's just hard finding much in depth, trustworthy research! What have you guys heard?

c) Candida Yeast Overgrowth: I actually came across this in another post earlier this afternoon and I feel like I've come across this before. Any thoughts?

It seems like there could be many explanations but I wonder if that is possible because it IS the "snowflake" disease after all; it shows in all of us differently right?

How would you guys say you manage your MG? Like through what supplements/diets/exercise plans/ etc etc. Has anyone else had a thymectomy and how do you feel it helped you??

I apologize for all the questions. I'm just bursting with them and would love to see what other research or tips everyone has. I hope that we can all help one another with our research and in taking the initiative to better our health. From what I have experienced, the docs will not do it for you. At least, mine won't. I'm too young to let this disease win me over and I'm tired of fearing about declining and getting worse when I'm only 23. It's too scary. :(

So I must continue branching out. I hope to have many great discussions! <3

Samantha,

I will leave the answers to your questions to the others who have more knowledge and experience with the specifics. But I do have a few question.

Did your CT Scan reveal a problem with the thymus? Was there a thymoma. What was the reason your doctors ordered the thymectomy? The MG Manual states that patients "with a thymoma do not respond to thytmectmy as well as those without thymoma, but other have reprobate good response after removal of tumor along with the thymus." (page 18)

How well did you handle the Prednisone? I been on a high dose for three weeks at the 60 mg per day, or 1.8mg/kg/day level. I have had remarkable results, although I do know that the positive results may diminish, as my neurologist starts gradually tapering the dose down to maintenance levels.

I have always tolerated drugs well. I attribute this to the extensive field experimentation I conducted during the 1970s. :)

-Mark-

I have read that thymectomy can be curative even in the absence of a tumor, especially in young people. It can, however, take a couple of years to work. I think that it takes that long for all the defective immune cells to die off.

It sucks to be so young and have this stuff. I am 56 years old and it sucks. It sucks worse if you are young. Your chances of improving from your surgery are much better than mine would be if I had the same surgery.

This is a good place to learn stuff and to talk.

Well I didn't have a tumor, but I did have an extra growth of tissue and it was slightly enlarged according to my neurologist. They kept pushing for me to get the thymectomy because I am young and generally strong/healthy, but I kept saying no because I wanted to attempt getting the condition under control with just meds first and I was severly afraid of surgery. It was after my breathing crisis in 2012 and other mini scares that I decided to go ahead and do it. I'm glad I did, because I conquered a major fear of mine--but I just hope it pays off. I'm trying to stay positive about it. I know it takes time, but it's hard. I'm handling the Prednisone okay, but I'm only on 30mg daily. After my recent swallowing crisis in December 2013, they put me on low dose Immuran to see if that will work better than the Prednisone. None of us want me to stay on Prednisone forever d/t all the risks...I'm not such a fan of the Immuran either but I need to seek other options as the Prednisone alone doesn't seem to be cutting it. So we'll see. ://


Hello there. The waiting is the hardest part! To see whether or not the surgery worked, I mean. I'm trying to do more than just wait by making sure I'm staying well rested, healthy, etc etc so as to maximize my immune system and my chances; and by extension, my life. I hope this works. It makes sense that it could take that long for the cells to die off; do you think there is research on this? My husband gets frustrated b/c he'll state the surgery was supposed to work, and I start to feel the same way as well. It's had for us to remember that it's going to take a while. It's all still so new in so many ways. I do agree, it does suck a lot. It may suck now, but I worry about how I'll be when I get older because aging is complicated in and of itself. I'll do anything I can to optimize my chances while I still can. :/

Samantha,

How long have you been on Prednisone? Here is the relevant chapter from the MG Manual:

The most predictable response to prednisone occurs when treatment begins with a dose of 1.5 to 2 mg/kg per day. This dose is given until sustained improvement occurs, which is usually within 2 weeks. The dose is then decreased over many months to the smallest amount necessary to maintain improvement, which is ideally less than 20 mg every other day. The rate of decrease should be individualized—patients who have a rapid initial response can reduce the dose on alternate days by 20 mg each month to 60 mg every other day. In those with a less dramatic initial response it may be preferable to change to an alternate day dose of 100 to 120 mg and taper this by 20 mg each month to 60 mg every other day. The dose is then tapered more slowly to a target dose of 10 mg every other day as long as improvement persists. If any weakness returns during dose reduction, the dose should be increased, another immunosuppressant should be added, or both, to prevent further worsening. Weakness invariably returns if the drug is stopped, but a very low dose (5 to 10 mg every other day) may be sufficient to maintain good improvement in many patients. For this reason, the dose is not reduced further than this unless another immunosuppressant is also being given. (MG Manual, page 19)

That sounds like a lot of Preds.

-Mark-

Hi scheshire1348,
About the origins of MG, the most frequent quoted ones are:
-surgery when some anesthesic products can promote MG,
-extreme stress due to an event, like loosing one´s job, a fatal issue for relatives or an accident,
-sudden or long effort.
I suppose my condition originated in stress + effort.
Maurice.