thanks,

sorry to hear about the relapse of your illness, and hope it is better controled now.


and indeed we are all in the same boat.

and should do our best that it doesn't sink.



alice

Welcome, Alice!

I'm sorry that you have MG, but am happy that you have found our group! We have a pretty good dynamic here, and having a doctor amongst us certainly makes that dynamic even more rich; I'm sorry that it's under these circumstances, though...

What are the main areas of weakness that you experience?

Just out of curiousity, have you ever heard of Manganese being a good treatment for MG? I've read many things about it being used in the past to treat MG, but my neurologists do not seem to be aware of this...I'm wondering if you've come across anything reliable that shows that certain supplements might be at least helpful....

Talk to you soon!
Nicky

Hi Nick,

I haven't heard of it. but would be glad to know if you have any information on that.

calcium and magnesium are essential for proper muscle contraction, so too much or too little of them can cause problems, but I am not aware of the role of manganse in that.

as to your qustion regarding my symptoms, I basically have involvement of every muscle group, which varies in severity. my fluctations are much more extreme then what MG patients usually have. and that has preplexed quite a few physicians. (including myself).
I guess the most troublesome is my respiratory msucles, because you can do OK even if you are unable to walk, but not so if you are unable to breath.
as long as I have my respirator with me, I am fine, but it becomes a problem every few months, when it needs to be readjusted, and then even with it, I feel that I can hardly breath, and need to see my pulmonologist ASAP.

I am really glad that I have found the way to still be able lead a reasonably productive life, and not give up all of my personal and professional dreams (although obviously had to put aside some of them).

and am quite hopeful that at some point they will gain a better understanding of those unusual and rare myasthenic sydromes, like mine, and I will be able to run!!! (like my neuro promised me I would after my first IVIG).

so possibly 20 years from now, when all my friends will start complaining of not being able to do what they did before, I will be the exact opposite!

alice

Manganese has been mentioned in the alternative medicine websites in regards to MG.
This is an example:
http://www.digitalnaturopath.com/cond/C491841.html

However, there are no papers specifically about this on PubMed.

The manganese connection is similar to the connection of zinc and selenium in the conversion of inactive T4 to T3 (thyroid).

However, self medication without testing of some sort, is not safe IMO. Excess manganese consumption is implicated in Parkinson's.
http://www.sciencedaily.com/releases...0201141559.htm

Manganese is pretty plentiful in vegetables. In fact vegetarians often get more than most others.
http://www.nutritiondata.com/facts/l...roducts/4313/2
This website is a very good resource to see what you are really getting in your food. This link shows 27% of manganese from one serving of canned pinto beans, for example.

Manganese has come up in relation to other neuro problems. I can recall posts about it on Tourette's in the past.
This is an interesting link:
http://www.ithyroid.com/manganese.htm
There have been studies showing elevated manganese levels in violent felons.

And manganese is often found in osteoporosis supplements.

When dealing with trace elements one has to be very careful.
I would not supplement with this mineral without testing and supervision.

Alice,
Great to have you on this forum and I wanted to welcome you here! I agree that we are all in the same boat and we shall right this ship one day, hopefully soon! I appreciate your input here, but feel free to also express your venting here, as you have those days just like the rest of us and need someone to vent to. We all have our "days" and you are no exception, so express yourself freely and no one will think anything different of you for it! As most of us have found, many of us even have family who do not understand what our life is like, but I have found I can come to this forum and vent and have friends here who understand. Again, welcome and thanks for your inputs.
Hugs,
Simon

Hey Simon!

Glad you feel well enough to post. Has the IVIG helped? Hope you're getting stronger and stronger. Cool front almost taken ahold. It will be WonDerFul!!! Should be a fantastic weekend....yippee!!!
Sue

Thanks simon,

of course I have my bad times, just like any one else,

and this illness is very hard to explain and understand, so obviously there are times when those around you, or even you don't understand what is happening.

and if you have a relatively unusual variant of this illness and/or have less knowledgable/open-minded physicians, or a combination of both, then they don't either.

if someone tells me they never have times of fear, dissapointment, despair etc. then I would think something is really wrong with them. how can you always be stoic about this?

the first time, I collapsed and found myself in a hospital bed, instead of at a hospital bed, and the neurologist that saw me, thought I had a pretty severe illness, pretty much "out of the blue sky" , I was quite overwhelmed and started crying. the nurse that saw me, who has known me very well from years of working toghether, was very surprised to see a physician crying and did not hide that. so I said to her, how could I be able to understand and accept my patient's normal responses to their suffering, if I don't accept my own?

and then when one of the neurologists that took care of me initially, who was also a good friend and colleague, when he saw me very sad, after my illness returned abruptly within a week, after a seeming "remission" , told me that he "can't see me like that" and suggested that I take antidepressants. so I told him that if it is so hard for him to see me like that, maybe he should take them.

it's just that I have been dealing with all this for more then 4 years,
have gradually learned how to live with it.
and am managing to have a pretty good life, despite fairly severe limitations that I have learned to bypass, overcome in various ways.

it was a lot of hard work, trial and error, excellent medical care, and quite the opposite as well, many times by the same physicians. a lot of hopes and shattered hopes, and then new hopes...victories and defeats....

finding those that can help, and avoiding those that mostly do more harm...even if it is out of the best intentions.

and mostly, trusting myself.

alice

Hey Simon,

Good to hear from you! We miss you around here. Hope you are feeling stronger. Take care.

Big Hugs,
Pat

Alice,
Thanks for the reply. Glad you are able to cope with your situation in the most positive way possible. I understand about great neuro's and others who might not be as much help. I am blessed with a great neuro and am thankful and also a great primary care physician. Keep on keeping on and we shall endure!
Hugs,
Simon