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Unread 11-27-2012, 07:15 AM   #11
alice md
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spin around 10 times in a blue polka dot dress.....
That I haven't tried yet...

Do you think it could help?

Would it be applicable if you do it in a wheelchair, or will the magic be gone?

Could just wearing the blue polka dot dress lead to some improvement or do you have to do the entire maneuver ?

Are you aware of any controlled trials comparing between blue polka dots to red ones?
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Unread 11-27-2012, 08:32 AM   #12
ginnie
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Default Hi alice

Loved your post, it brought a big smile to my face. Poka dots are out, checks are in now, and they are running trials. ginnie
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Unread 11-27-2012, 08:46 AM   #13
alice md
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Loved your post, it brought a big smile to my face. Poka dots are out, checks are in now, and they are running trials. ginnie
Thanks Ginnie,

That's wonderful news.

I am really looking forward to the results of those trials.

Gives us all a lot of hope.
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Unread 12-02-2012, 02:00 PM   #14
BackwardPawn
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Originally Posted by StephC View Post
There was a recent thread on similar issue with some very good answers, ideas. It had to be within last few months.
I think it was my thread, since I have the nurse at work who kept trying to sell me her dietary supplements saying they'll cure autoimmune issues.
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Unread 12-16-2012, 07:10 PM   #15
pjlla
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Originally Posted by Needananswer View Post
If one more person tells me that if only I'd do more yoga or mediation or think more positively... Or juice, fast, eliminate entire food groups, add in entire food groups, or spin around 10 times in a blue polka dot dress.....

Sometimes I want to jump out of my half closed eyes and rant + rave slurred speech and all. If I only had the energy to get into downward dog. Honestly, most of my friends have a hard time accepting that their high achieving, athletic friend suddenly has a hard time walking around the block or opening her eyes. Those that "get it" have taken the time to research MG and for them I'm grateful.


Though I am new to MG, I am not new to chronic illness. I explain that it is better if they can simply offer support rather than suggestions.

Stay strong!
Needananswer....

I sounded very much like you about 5 years ago. I was diagnosed with MG about 10-12 years ago.. I tried a lot of things and nothing seemed to help. The adjective thin was never used to describe me, but after coming down with MG which caused a reduction in activities I really got heavier. It was a vicious cycle. Now I did try dieting with Atkins and lost some weight, I also tried some supplements also and again overll I was a bit better, but by and large it was negligible. Then after a while, I gave up dieting and gained my weight and I was worse... Then about 2 years ago I had a bad accident. I was cleaning my gutters and the ladder I was on slipped on the deck and it slid away from house. It was kind of like those bugs bunny cartoons where the ladder fell away and then I started to fall right into the ladder. I broke my face (lower jaw, upper jaw, pallette, cheek, eye socket, 5" fracture of skull, destroyed a sinus cavity, had blood leaking into my skull and spinal fluid leaking out.. Then I fell off the ladder onto the deck and did a dbl compound fracture of my right arm.. I was in ICU for a week and in a regular hostpital room for a couple more days, then a rehab hospital for a week. When I was in my hospital room they wanted me to get out of bed I walked to the chair and thought I wouldn't make it. i then got up from chair and walked to bathroom. Then I walked back to chair. These short walks took everything out of me. I realized at that moment i've got to do something. Well, I have a sister who is very very healthy and into eating proper nutrition. Well, I ignored her in the past, but thank god, she was there to help me recover. When I was in rehab hospital, she brought a juicer and fed me juices. (The rehab hospital idea was to serve me stuff like mac and cheese and blend it up since my jaw was wired shut). I couldn't even eat apple sauce with it getting caught in my teeth.

Anyways, after 6 weeks and finally being able to eat solid food, I decided to stay eating healthier. I am on a low carb diet. I eat hardly anything processed, if any. I eat nuts, vegetables (low carb) and some fruits (mostly berries and other low carb fruit). I do eat lots of protein such as in nuts and meats. I also eat lots of fiber (flax meal, hemp protein etc). As far as supplements, I take a ton of them, name a letter, I'm taking that vitamin. I take fish oil, borage oil, flax oil. Also lots of other supplements to reduce inflammation. I used to do IVIG to stregthen me, but I haven't had an IVIG in almost 2 years the last one I had was while still recovering at home after my accident. Since then, I haven't had the need of it.

In short I'm trying to say, I get it and not wanting advice. i tried a lot of things and they didn't work. Then, I tried more of what I did before, more supplements, more vitamins, more exercise, better eating. (Real low carbs) etc. Finally it worked.

So, I realize I may be just like the people you are frustrated with. But I also hope you take this and know maybe you'll be lucky like me and changes to our diet etc can help you.

If you folks want, I'll post the supplements I take daily...

One last thing in full disclosure. .I had been taking cellcept for at least 8 years. And, I still am taking cellcept. However, on the last visit to the dr (about 3 months ago). I asked if I could decrease the amount I take and hopefully not take it anymore. He wasn't crazy about the idea. But, he did say if I continue to stay in my current health, he will lower my medication after my next visit (July next year).

Good luck all
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Unread 12-17-2012, 10:02 AM   #16
alice md
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So, I realize I may be just like the people you are frustrated with. But I also hope you take this and know maybe you'll be lucky like me and changes to our diet etc can help you.
I personally do not think you are. It is very different sharing your own experience and what has helped you (which may or may not help others) and giving advice on something you know very little about.

Like many people here you went through a long journey of learning your own illness and finding what makes it better or worse. You eventually realized the importance of nutrition and life-style on your illness.

It's not like someone healthy coming and telling you that you should exercise more, because you are out of shape.
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Unread 10-13-2013, 08:59 AM   #17
Needananswer
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Pjlla-

I am sorry I didn't see your reply earlier. And you don't sound like the ppl I was frustrated with at all! For one, you have been through it and, secondly, my frustration was primarily surrounding friend's who really chose not to "get" that my life was impacted by this disease despite my uber healthy lifestyle. I've had countless ppl say, "at least it is not MS or cancer" and I do think those types of comparisons are both dangerous and insensitive.

I too have modified my diet substantially and for me my symptoms often become much worse when I eat the wrong things. I tested positive for fructose intolerance and adhering to a low fodmap diet has helped a lot. I've always been a health nut so I too steer clear of processed foods of any sort. I'm also on a lot of supplements and weekly IM b12. They all help greatly.

Anyway, thanks for the feedback. Hope u are feeling well!






Quote:
Originally Posted by pjlla View Post
Needananswer....

I sounded very much like you about 5 years ago. I was diagnosed with MG about 10-12 years ago.. I tried a lot of things and nothing seemed to help. The adjective thin was never used to describe me, but after coming down with MG which caused a reduction in activities I really got heavier. It was a vicious cycle. Now I did try dieting with Atkins and lost some weight, I also tried some supplements also and again overll I was a bit better, but by and large it was negligible. Then after a while, I gave up dieting and gained my weight and I was worse... Then about 2 years ago I had a bad accident. I was cleaning my gutters and the ladder I was on slipped on the deck and it slid away from house. It was kind of like those bugs bunny cartoons where the ladder fell away and then I started to fall right into the ladder. I broke my face (lower jaw, upper jaw, pallette, cheek, eye socket, 5" fracture of skull, destroyed a sinus cavity, had blood leaking into my skull and spinal fluid leaking out.. Then I fell off the ladder onto the deck and did a dbl compound fracture of my right arm.. I was in ICU for a week and in a regular hostpital room for a couple more days, then a rehab hospital for a week. When I was in my hospital room they wanted me to get out of bed I walked to the chair and thought I wouldn't make it. i then got up from chair and walked to bathroom. Then I walked back to chair. These short walks took everything out of me. I realized at that moment i've got to do something. Well, I have a sister who is very very healthy and into eating proper nutrition. Well, I ignored her in the past, but thank god, she was there to help me recover. When I was in rehab hospital, she brought a juicer and fed me juices. (The rehab hospital idea was to serve me stuff like mac and cheese and blend it up since my jaw was wired shut). I couldn't even eat apple sauce with it getting caught in my teeth.

Anyways, after 6 weeks and finally being able to eat solid food, I decided to stay eating healthier. I am on a low carb diet. I eat hardly anything processed, if any. I eat nuts, vegetables (low carb) and some fruits (mostly berries and other low carb fruit). I do eat lots of protein such as in nuts and meats. I also eat lots of fiber (flax meal, hemp protein etc). As far as supplements, I take a ton of them, name a letter, I'm taking that vitamin. I take fish oil, borage oil, flax oil. Also lots of other supplements to reduce inflammation. I used to do IVIG to stregthen me, but I haven't had an IVIG in almost 2 years the last one I had was while still recovering at home after my accident. Since then, I haven't had the need of it.

In short I'm trying to say, I get it and not wanting advice. i tried a lot of things and they didn't work. Then, I tried more of what I did before, more supplements, more vitamins, more exercise, better eating. (Real low carbs) etc. Finally it worked.

So, I realize I may be just like the people you are frustrated with. But I also hope you take this and know maybe you'll be lucky like me and changes to our diet etc can help you.

If you folks want, I'll post the supplements I take daily...

One last thing in full disclosure. .I had been taking cellcept for at least 8 years. And, I still am taking cellcept. However, on the last visit to the dr (about 3 months ago). I asked if I could decrease the amount I take and hopefully not take it anymore. He wasn't crazy about the idea. But, he did say if I continue to stay in my current health, he will lower my medication after my next visit (July next year).

Good luck all
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Unread 11-24-2013, 08:03 PM   #18
BackwardPawn
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Originally Posted by StephC View Post
There was a recent thread on similar issue with some very good answers, ideas. It had to be within last few months.
I don't know if its the one you're referring to, but I started one a while back when a nurse wanted me to take dietary supplements that are supposed to be a "miracle cure."

I don't know if your friend will wise up, but the nurse since realized I have more going on than a supplement will fix (even though she still insists it would do some good if I'd try it).
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