myasthenia gravis

Hi everyone. I've been living with MG for 10 years now. I've had pretty much every surgery, every treatment, every pill that can be given to an MGer. I have came close to death a few times when my breathing decided to quit on me. I'm 37 and am currently in cancer remission! (Those were fun having together!).
Sleeping, and getting restful sleep, are my biggest challenges. I've tried many pills, prescription, and OTC. Most only work for a few days before I am used to them.
Walking is a huge chore on some days. I have a tendency to over do my body...but I refuse to let MG win every battle!!
I'm here hoping to hear of new treatments that I can discuss with my neuro. And to here how other MGers make things easier for themselves. I've noticed the older I'm getting the more active my MG is getting.
Any advice, or just an hello, would be appreciated.
Thanks :)

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Hope your feeling better now I get off days but like you this lems is not going to get the better of me.
Take care

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Julone43,

Having a positive outlook on this disease and how you can look at this with a smile, will help you the most. I am not feeling well tonight and just wanted to give my 2 cents worth. Take care. Kelly

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I to have a job sleeping I read a lot and got myself a little cd player with some story tapes.If I wake in the night I just put it on and find it gets me back to sleep again.Will keep you informed what my specialist comes up with.like you I will not let this illness beat me I am sure that very soon we will all have a drug that will make us so much better

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Ksh... I so understand. The neuro has taken me off prednisone while I await approval from my insurance for the home health IVIG nurse. Of course, I'm still not sleeping...but he doesn't want to give me anything for it at this time. It is a constant struggle to find a medium with this, isn't it? My hubby went and bought me some relaxing bath salts and my neuro said for me to get some melatonin for right now. Fingers crossed this combo can help. I refuse to give up on finding much needed rest! :)
Julone...good luck and keep us posted!

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Funny but my sister phoned me up yesterday there was a article in the paper about this Retuximab how they were pleased with the results on tests for mg and lems so god willing we will all be able to live better lives,I will talk to my specialist and come back to you all. I go on the 18th of this month

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Mrs Vga,

It's 11:30pm and I am still up. I feel tired but just can't sleep. I am listening to Jazz and looking at my e-mail. I find sleep something of an adventure personally. When I do get some rest, I feel great. When I am up like now, I feel really run down and don't want to do anything. I take "naps" and tell myself I need one. It's the predinsone. Damn if I do, damn if I don't.

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Yes thats true you have to ask dont you

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I'm not really familiar with Lems...other than knowing the effects of the disease afford reactions on the body similar with MG. I do believe it is worth talking to your neuro about new treatments. You never know what may work if you don't ask!

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You can learn about rituximab on their website. It's a monoclonal antibody designed to capture CD20 autoantibodies.

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I have been reading up about this drug Retuximab.I have lems which is very like mg and have never been offered this drug
im going to see my specialist on the 18th august and ask him about it also I want to look into stem cell treatment.I looked into stem cell treatment 2 years ago but they would not even think about it in this country I could have gone abroad to have it done but without it being safe I would not chance it.I have IVIG treatment every 3 months but have side affects for about 3 days after then I feel ok for a few weeks. I have had lems for about 12 years now and I was lucky I didnt have the cancer with it.It would be lovely to be cured and live a good life I have a grandson who I would love to beable to do thing with him but just have not got the energy to do it just a few years remmision would be lovely sorry to moan but I know you mind.
God bless

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Hi I would like to hear more i suffer with lems which is like mg

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Hi Ksh! Thanks for writing :-). You mention running until you realize you can't anymore. Soooo many people tell me that I do to much. I tell them to remember I have MG, it doesn't have me!! It isn't always that easy, I know, but I refuse to just lay around a lot. I believe that it is beneficial to push my MG more than it hurts me. Oh, I've went into to crisis a few times, but on the whole...I balance it pretty well.
There isn't a support group in my area either. I turn to the web for support. It is wonderful being able to know I'm not alone. My family and friends are wonderful in every area of support, but they aren't MGer's.
I'm waiting on my insurance to approve home health for IVIG at this time. My neuro decided to let me go this route in place of the pheresis. We are trying to ween me off of cellcept, as I've been on it for 8 years. I developed cervical cancer last year and my neuro fears that it could be because of the cellcept. I am the 2nd person of his 3 MG cases to develop cancer. It's a scary thing, these drugs we "need".
Hope all have a wonderful day!! I slept 4 hours straight last night!!! Woohoo!!! :)

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sure knowing abt good results and abt ppl could do succeed to come out of this is really helping

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for KSH ya i noticed u r away for last 2 weeks , welcome back :)
yup I know 3 drugs are being under testing now , one of them replacement for mestinon it act on the muscle strength through the calcium channels ,completely different mechanism than mestinon and almost less side effects ,if it work well it will big big victory for all myasthenia gravis patient , but at least 3 years from now to get final results ,
another one being under investigation ,is old drug being given for patient after chemotherapy to boost immunity , but it's being tested for MG patients that may make balance again for the immunity ,meaning recoorect the behaviour of our immuntity \nd nomore produce that stupid antibodies :))
and the last one is like all disease they try to find solution through stem cells ,
thats all i know for now , and that gives big hope ,
something i did notice wanna share with u , only non improving cases only come her or to support groups in general ,that means majority og MG have almost normal life and only few cases are resistant like our cases , that may be looking disapointing ,but i see it promising that someday it will go ok liek the others :)

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The salesmen are out today!

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MrsVga and Doadoa,

It's good to have people who understand MG and can help you through the bad days. I have been busy the past two weeks. Just got back from a funeral and had to go back to my clients to help them. Today is a day of rest! I really understand the "over doing it". You feel like a million bucks and want to run. You forget that it can haunt you the next day if you do so.

There is not a support ground in my area and having this site is the only way I can help others and others can help me. I heard that there is a new drug in the testing process that works like predinsone without the side effects. I sure hope this is true. I have been on predinsone for over 25 years. It's the only drug I can take. Sleep? yea, it would be nice to put your head on the pillow and sleep through out the night. I, too, have tried everything. I take some things for awhile, then I drink sleepy time tea, then go without, the start over. I hope to hear from you two more now. I need some support and reminder that I can still do things. And, just a reminder, the MDA telethone is coming up. I already donated $10.00. It's not much but it works. Take care my friends, Kelly

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MG is tricky disease, going up and down , and may be some one respond to predinsolone only and go on remission and others not , and at certain time u may respond to certain medicine and later nomore respond and vise versa , meaning one drug you used before wasn't useful and after years if u use it it can help ,
just we can not stop trials unless we r ok ,
never say i tried everything and nothing improving , changining the doses and changing the mix u take

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my believe that thymus realy doesn't help at all , because i believe if it has real rule so anyone remove it will go ok , while only 40 % only improve after thymus removal , and my thoughts thatthese 40 % would improve even they did not have the thymectomy , it's only by chance that they improved at the same time they did it ,
but most of neurologist recommend it as trial ,
my neurologist did not give much attention for it and he sadi at the time ur in good condition we can think abt thymectomy cuz results not confirmed yet ,

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Generally MGers find their thymus doesn't shrink. They remove it because of a few reasons, most importantly so it doesn't turn tumerous and develop cancer. At least, that's why I was told my doc wanted to remove mine.

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Dow Dow,

How does the removal of the thymus help MG? If the thymus shrinks with age and becomes benign I would think its removal would not change much. How does the thymus impact MG?

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