My 55 yr. old husband has MG. I was wondering if anyone else reading the Neuromuscular board has MG as well.



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Cindy T.

"We are visitors on this planet. We are here for ninety, a hundred
years at the very most. During that period we must try to do
something good, something useful with our lives. Try to be at peace
with yourself and help others share that peace. If you contribute to
other people's happiness, you will find the true goal, the true
meaning of life."

~ The Dalai Lama

I do.

I also have MG. It'd be so nice to have our forum on this board, don't you think?

Koulafeena

hello this is my first time hear i have congenital MG i have had it all my life 43yrs it is getting much worse i take mestinone but it dosnt help much my doctor says there isnt anything else to do or take if anyone knows of anything i need help badly i am getting very weak. thanks

Are you going to someone who specializes in neuromuscular disease?

Are you anywhere near the Cleveland Clinic?

How far could you travel?

If you could call over to the Cleveland clinic, maybe they know of someone who specializes in congenital MG.

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Sincerely,
Koulafeena

I just checked on google & there's a doc who specializes in Congenital MG at Mayo Clinic. Good luck.

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Sincerely,
Koulafeena

I am currently being worked up for this diagnosis. I have symptoms that could be other things also. My MRI showed a lesion in the left parietal lobe - but they do not think it MS. My symptoms lead more toward MG. My EEG results are not back yet and my doctor is referring me to a neurologist. Could someone share briefly what their symptoms were when first dx'd and what were the tests like? I appreciate any and all support. Feeling a little lost right now.

I am being worked up for this too.... MG vs MS. What sort of symptoms are you having?

Thank you.

nanamyra,
I hope you are going to Johns Hopkins, since you live in Baltimore. they are very thorough there, if nothing else.

One of the best diagnostic tools for MG is the Anti-Ach receptor antibody test. this test is a simple blood test that can diagnose up to 80% of MGers. A negative result doesn't mean that a person doesn't have MG, it may be harder to diagnose, though. It can be drawn by any doctor.
There are LOTS of other tests, but that seems the easiest way to start. (to me, anyway.)

My suggestion is to get into Johns Hopkins MDA clinic as soon as possible.

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Sincerely,
Koulafeena

Hi! I am glad to find this board. I have MG and was diagnosed approx 3/01. Had terrible symptoms that were getting worse - double vision, muscle weakness, trouble swallowing and speaking. Was told 6 yrs. ago that I had MS and just to "live with it". Finally found a good dr. that would listen and she diagnosed MG right away and confirmed it with the anitbody test. Had a thymectomy 8/01 since a spot showed up on my CT scan (turned out to be nothing). Received second opinion at the Mayo clinic and they agreed w/ my dr. Symptoms are mostly under control now due to mestinon (45 mg 3 to 4 x per day). I do know others have had success using steroids and mestinon for treatment.

I started having MG symptoms in 1970 (double vision, falling down, couldn't step off a curb unless I held onto something (like a fire hydrant), couldn't walk down steps or parking lot ramps without holding onto something (like the cars in the parking lot), but even though I went to numerous doctors, I wasn't properly diagnosed with MG until 1983.

The diagnosis consisted of the neurologist telling me to raise my arms and clap my hands together above my head as many times as I could. I forget how many times I was able to do it -- not many, because my arms would not go above my head anymore, even though I struggled to get them up there. Next, the doctor injected Tensilon in my vein and said to try the exercise again. I had no problem doing it over and over and over, with absolutely no weakness! The doctor told me I could stop after I'd done it maybe 30 times. Regrettably, the effects of the Tensilon wore off quickly. It's only used for testing and can't be used for treatment.

I was prescribed Mestinon, 60 mg every 4 hours, and it stopped the double vision and gave me back a lot of my lost strength. When I returned to the doctor for a follow-up visit, he said, "You know, you must have surgery to have your thymus gland removed -- a thymectomy." I replied, "Why? The Mestinon works great!" He said a thymectomy was standard procedure.

I decided to go to a different neurologist, who ordered a CT scan or MRI (can't remember) to look at my thymus gland. It wasn't enlarged, so my new doctor said no surgery was necessary.

Both of my sisters also have MG. Both of them had thymectomies and both were prescribed Mestinon and Prednisone, and both have had many broken bones because of the Prednisone. Neither of them had any improvement in their MG after their thymectomies. My older sister weaned herself off of the Prednisone, but my younger sister had severe pain all over her body every time she tried to get off the Prednisone, so she's continued to take it for 29 years. She's 50 years old now, and because of the Prednisone, her skin sags like a 100-year old woman, her ribs and vertebrae fracture spontaneously, her hip broke when she was 32 years old while she was walking home from the store, and she is now bent over and facing the floor because of all the compression fractures in her spine. She is in chronic severe pain due to the degeneration of her spine, and there's nothing that can be done for her except to give her pain pills. Now she's addicted to the pain medicine (oxycontin), and it doesn't help her much -- she still cries because of the severity of the pain.

If any of you take Prednisone for MG, try to get off of it so you won't end up like my younger sister.

Hi, I am a 29 yr old female who was diagnosed with MG 8 mnths ago and I hope the information I provide will be useful but please only use this info as a general idea of the disorder as I am not a healthcare prof-yet! (only a student nurse). Check everything with your doctor/consultant!!!

My symptoms included muscle weakness in the upper/lower limbs, drooping eye lids, double vision and problems with chewing, speech and swallowing (general MG) but you should note that MG can be confined to one particlar area eg. eyes (occular MG). MG is a weakness of the skeletal/ voluntary muscles including respiratory muscles and is not associated with pain or loss of feeling and muscles progressively get weaker throughout the day ie. the more you use them the weaker they become.

To control the MG I take prednisalone (corticosteroids, not the same as the ones bodybuilders take) and pyridostigmine (mestinon) which have controlled my MG successfully but I realise it tis not the case for everybody. Steroids can have serious side effects including osteoporosis-I would make sure your neurologist provides you with a medication to prevent bone loss-I take Fosamax and make sure your calciun intake is sufficient. Find out as much about the side effects, how you can reduce them and regular checks that can be provided to monitor them. Snowgoose suggests to come of steroids as soon as possible and I can completely relate to his reasoning but discuss with your consultant BEFORE you reduce or stop the use of steroids as withdrawal symtoms can be dangerous! You should be monitored regularily when reducing dosage. Also note you are more prone to infections as the steroids supress the immune system so always be vigilant especially with chickenpox (can be fatal) so take no chances-if you think you,ve been in contact with anyone with c,pox go straight to your doctor even if you are unsure.

Regarding thymectomies, you should not write them of. Find out as much as possible about them so you can make an informed choice. I had a CT scan 6 mnths ago which indicated no abnormalities of the thymus gland but my neurologist suggested my thymus was 'better of in a bucket'. Weighing up the pro's and con's I decided to go ahead with it and 3 wks ago I had my thymectomy. The surgeon discovered my thymus was enlarged and I had a thymoma (type of tumour) which was benign thankfully (most are and are slow growers, only approx 10-15% of MG sufferers have thymomas-don't quote me on that though!). Although the thymus is part of the immune system your body makes it reduntant in adulthood so you won't miss it! I would suggest if your CT scan is clear and you decide not to go ahead with it ask your neurologist if it is possible to get regular CT scan checks for peace of mind.

Well I hope this info was of some use and I didn't bore you all to death. Goodluck with your MG!

PS. Nanamyra, as Koulafeena says the best test is the anti- receptor test (blood test) but a good consultant should check your muscle strength through a no. of techniques-holding elbows/knees up as he/she tries to push down on them, checking speech (may ask you to count to 100, ckecks for slurred speech) and checks for double vision-only some of the checks. There are some brillint Myasthenia Gravis internet sites out there but do make sure thy are reputible. Most importantly-don't worry!(stress makes it worse).

Finally! I too have MG! (Or at least that's what they're calling it) I have all the symptoms, but tests come out negative. But I guess that can happen. I've had it since birth as well (42 yrs.) Was on Prednisone for 27 years, tried Mestinon, and others, but they do not help. I received 3,4 Diaminopyridine from Mayo Clinic but it doesn't help much. At my last visit with my dr we both decided I must just live with it! I was in remission for many years, but now I'm worse than ever. My fingers are even affected. I'd love to hear what some of your other symptoms are. I don't have the traditional breathing, swallowing or droopy eye symptoms, but my arms and legs are quite useless. How do you deal with the depression that comes with feeling useless? My husband does EVERYTHING for us; cooking, cleaning, laundry, 40 hr/week work..... I feel bad for him.

Right now I just stay depressed and try to keep going the best I can. I'm also looking into low dose naltrexone (on my own) to see if that might help. You might want to do a search on that--it certainly can't hurt.

Kiki