Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Ok, I'm going to sound like a gripe right now, but I wanted to see how you all feel about this:
I have a LOT of organic/health conscious friends. While I eat well, eat organic when I can, take my vitamins, exercise and get massage, I've never been much into some of the alternative therapies. I believe that all things are good, in moderation.
Since my diagnosis, and now dealing with a cancer scare, many, many of my friends are telling me all these crazy things I should do from chelation, salt therapies, gluten free, chinese medicine and supplements galore. (especially the ones they are selling) Some of them think that chiropractors cure everything. I have one friend who thinks that emotions cause everything. While I believe that stress is terrible on the body, he has gone as far as saying that people with auto-immune diseases hate themselves (thus attacking their own tissues) and the only way to cure it is to deal with the underlying self hatred. (really?)
While I understand their intent is to help, it just makes me uncomfortable. I'm sure that some of it is good. I go to a chiropractor when I am out of joint, and I have even been considering acupunture. But first and foremost I am going to listen to my doctors right now. That is it. I am not going to complicate the issue by putting things in my body in addition to what my doctor wants there.
I have very good friends. I am very blessed. I'm just not sure what to say to people when they get like this.
Anyone else dealing with this? Any alternative therapies that actually good with MG?
Thanks!
Leslie
I have a LOT of organic/health conscious friends. While I eat well, eat organic when I can, take my vitamins, exercise and get massage, I've never been much into some of the alternative therapies. I believe that all things are good, in moderation.
Since my diagnosis, and now dealing with a cancer scare, many, many of my friends are telling me all these crazy things I should do from chelation, salt therapies, gluten free, chinese medicine and supplements galore. (especially the ones they are selling) Some of them think that chiropractors cure everything. I have one friend who thinks that emotions cause everything. While I believe that stress is terrible on the body, he has gone as far as saying that people with auto-immune diseases hate themselves (thus attacking their own tissues) and the only way to cure it is to deal with the underlying self hatred. (really?)
While I understand their intent is to help, it just makes me uncomfortable. I'm sure that some of it is good. I go to a chiropractor when I am out of joint, and I have even been considering acupunture. But first and foremost I am going to listen to my doctors right now. That is it. I am not going to complicate the issue by putting things in my body in addition to what my doctor wants there.
I have very good friends. I am very blessed. I'm just not sure what to say to people when they get like this.
Anyone else dealing with this? Any alternative therapies that actually good with MG?
Thanks!
Leslie
http://www.dailystrength.org/c/Myasthenia_Gravis/forum/12425104-mercury-have-you-seen
Digestacure! (Also a sponsor at Daily Strength and will cure MG by changing the appearance of your stool):
http://www.dailystrength.org/c/Myasthenia_Gravis/forum/14835482-possible-mg-cure/page-2
The Paleo Diet:
http://www.dailystrength.org/c/Myasthenia_Gravis/forum/18842969-introducing-myself-and-saying-hello/page-3
Natural remedies:
http://www.dailystrength.org/c/Myasthenia_Gravis/forum/16229714-any-tips-natural-remedies
Have fun! Myasthenia Gravis has a very good standard treatment, but many people don't respond to it, or don't tolerate this or that drug. We are all different. Many of the claims made for alternative therapies are not disease specific -- they work on anything!
Be kind to your friends who believe in this stuff, because they may be getting some benefit from the placebo effects. And they just want to help. When I got DXed, a well-meaning relative wanted me to take a cure-all natural supplement high in magnesium that his holistic practitioner was selling -- I had to gently tell him that magnesium would aggravate my MG! ~joe
Your well-meaning friends are not walking in your shoes.
They don't have MG which IS a life threatening disease.
Perhaps they don't realize the gravity of your condition?!
Most* of us cannot afford to experiment too much with our
treatments and rely on tried and true medicines to manage MG.
There are wonderful complements to medicine, but some things
out there may do more harm than good in regard to MG.
Bottom line, I think they mean well, but don't have all the facts.
Friendships are tested when illness is in the mix. Most often, the intentions are really pure even if misguided.
Empathizing,
Carly
I do get similar comments and I say something like "thanks so much for your concern. It is so great to know how many people are cheering for me to get/stay healthy. I've got great people on my team (I actually have a naturopath so mention it) and they are doing wonderful work to help with my quality of life issues".
At least they care! When I told my mother-in-law she said "I have arthritis is this one joint on one hand that is such a problem" and I tried to be supportive. Hard to hit home that we have a life threatening disease! And that I'll not likely make it to 90 like she has.
Flutebell
I had to get firm with a family member who was forever sending me absurd online articles about "curing" Chronic Fatigue Syndrome (which I do not have!) with yoga or something. At some point, I had to say to him, "this is offensive to me. I don't want to receive any more of this material." Seemed to work!
If there was a true alternate therapy that worked Most of us would for sure b on it, since we communicate so well here. I think you are on a good path trying to eat healthy, excercise and massages!!
When someone gives me such advice, I thank them and tell them I will research it. What erks me is when someone fluffs MG off. Just last week I had a friend say "Well at least MG is not one of those serious diseases, you know that you can die from." I politely corrected her and moved on. There are so many that are clueless about MG. Guess it is up to us to spread the news on it.!
Great advice all.
Leslie
The issue we face is that the healthier we are....the better we feel....and then mg is better.
T least that is how it is for me. I did give up gluten. I do notice a difference when I eat healthy.
Everyone cares. I just listen. The hard part is exercise advise ...since movement and this disease is crazy.
Just don't take anything to stimulate immune system.
I did....and it put me into crisis. We have to watch everything we do as far as stimulating our immune system. This disease is insane.
My reality today was taking the advice of my MG friends who are further down the path than I am, and asking my neuro for a scrip for a handicapped sticker, so that when I walk 20 feet through a parking lot, I don't end up with a machine breathing for me. . If exercise would make all this madness go away, I'd sooooo be in the gym 10 hrs a day!!
Tamara