Myasthenia Gravis - does anyone have this?

[Wolfwoman]

Hubby did not have good luck with the Mestinon... I'll see if I can get him on here later on to add more to this.

He is taking the Immuran now (sp?) and it seems to be helping a lot more, however, it's a kidney killer drug so he's in for a lot of blood tests.

 

[Hillbilly Hen]

Thanks Wolfwoman. I will check in later. It has been a hectic week and I am for bed soon. The new neurologist that I will be seeing next week is on the medical advisory board for the MG foundation. I am hoping for a good doctor this time.

 

[Wolfwoman]

Hillbilly this is wolfwomans hubby I am sorry to hear and read what your going through, I only have the OMG so I can only tell you my side, and the drugs I am on. The thymus is a key but I do not have the money to do the Cat scan and really am sure that is the key to remission, I am on Azathioprine and predizone (sp) and was taking 40 mg and gain so much weight my doc has reduced my dosage to zero now as the Azathioprine will do the same thing. this drug is used for transplant patients and with it you have your blood tested weekly x4 then bi monthly x2 then monthly x3 and if things are ok it goes to qtrly . I did have some muscle tension when I was on another med and the zone and had got and cold sweat all the time and shortness of breath to the point of not wanting to walk more than 10-20 steps and sit down. I do not know the reason for this crap I do not like it but now have learned to deal with it. Let me know all the drugs you on,
Like Wolfie tells me your not along but truthfully their are not many of us out there and that is why their ins not much research on this. Check with MDA also I have not but know this is under their umbrella. Will be waiting for you answer.

 

[Hillbilly Hen]

Thanks Wolfwomans DH for the info. I am taking just mestinon right now. [ I also take an allergy pill and pravastatin for high cholesterol] I suspect that I may have more than just the occular MG although that is bad enough. The meds help some but then it wears off and I start having the double vision again. I cannot increase the dosage [I take 60 mg three times a day] because of the side effects. Sometimes I have side effects with the usual dosage. I am the type of person that if the side effects are worse than what I am treating then I won't take the meds. I am hyper sensitive to meds anyway. I am worried about getting put on prednisone because I don't want to gain weight. There is a MG foundation in Grand Rapids [an hour away] and I am going to be seeing a doctor that is on the medical advisory board. After having the double vision for a year and a half I am glad to finally know what is causing it. I am just trying to educate myself and thought if there were anyone out there that had it, that maybe they could share info. Thanks so much. I hope that yours won't progress any.

 

[Three Cedars Silkies]

I have a friend who did have her thymus removed and now has no symptoms and is on no meds.

 

[bwebb7]

My cousin had the surgery 20 years ago-she did very well.
Best wishes to you

 

[Wolfwoman]

WELL AT LEAST YOU HAVE A GROUP NEAR YOU, i KNOW i HAD AND AT TIMES HAVE DOUBLE VISION BUT WITH THE NEW MED'S IT IS MUCH BETTER, i KNOW THEY CAN PUT PRISMS ON GLASSES TO CORRECT THE VISION AND A FEW OTHER THINGS IF YOU WEAR GLASSES. IF YOU HAVE HAD THIS FOR OVER A YEAR WITHOUT KNOWING IT UNTIL RECENTLY THE THE THYMUS SURGERY MIGHT BE THE BEST THING. I JUST DO NOT LIKE THE IDEA OF SURGERY BUT I WAS TOLD IF I STOP BREATHING TO GET ME TO AN EMERGENCY ROOM AND MY DOCTOR WOULD BE WAITING, THUS FAR ALL IS WELL DEPENDING ON THE MEDS DO NOT MISS A DOSE OR WHEN YOU THINK ALL IS WELL STOP, DO NOT DO IT...THIS MG AND OMG IS NOT FUN, IF YOUR FEELING TIRED ALL THE TIME IT IS THE MED HE/SHE HAS YOU ON, I DO NOT KNOW IF THE MEDS ARE AFFECTING YOUR WALKING, I HAVE TWO BAD KNEES SO I ALWAYS FEEL LIKE I AM WALKING ON EGG SHELLS, FYI CHECK WITH THE DOCTOR AND SEE IF YOU CAN GET ON DISABILITY, MINE SAID I COULD BUT I DO NOT WANT TO DO IT YET. YOU CAN ALWAYS CONTACT ME THRU WOLFWOMAN. BELIEVE ME I KNOW WHAT YOUR FEELING. AND GOING OUT IN THE WOODS YELLING DOES NOT HELP,

 

[Hillbilly Hen]

Thanks. I tried that going out and yelling in the woods, you are right, it does not help. I am not eligible for disability... apparently being a stay at home mom does not count for much

The first neurologist I was seeing said to stop taking the meds due to the side effects and he wants me to go to a neuromuscular clinic at MSU. That is a good 2 hours from me. I had to practically beg for a diagnosis. He just was not doing much and then did not want to see me till October. This was before I pushed the issue of not having a diagnosis yet. Things have been so crazy here lately with trying to get the garden in, build a new coop & run, a birth in the family and FIL in the hospital. I am just so tired and still cannot seem to sleep. I was thinking that the breathing problems were asthma related. I had it as a child but as I got older it would only bother me when the weather was real humid or if I were to get sick. Now I am beginning to wonder. I don't like the thought of surgery. Especially one like this. I am just too busy and I don't want to give DH more work to do. He does so much already.
Sorry for the rant, I guess I am feeling a bit overwhelmed.

 

[Wolfwoman]

RANT AS MUCH AS YOU WANT, THE WAY I DISCOVERED MINE WAS MY EYELID KEPT ON CLOSING AND I WENT TO SEE MY EYE DOC AND HE WAS BUM FOUNDED SO IHE SENT ME TO HAVE A BLOOD TEST THAT COST OH AROUND 600.00 AND IT TOOK ABOUT 11 DAYS TO GET THE RESULTS BACK AND THEN HE REFERED ME TO MY neurologist. AND THEN HE BEGAN TREATMENT, AS I SPOKE OF BEFORE, AND CHANGE MY MEDS 3 MONTHS AGO AND TO REALLY KNOW HOW THEY ARE GOING TO WORK TAKES UP TO SIX MONTHS AND ITS ONLY BEEN A LITTLE OVER 3 MONTHS NOW. AND I DO KNOW THEIR IS A BIG DIFFERENCE. WOLFIE CAN ATTEST TO THAT.TRUTHFULLY SOUNDS LIKE YOUR DOC IS A QUACK...SLEEP IS ANOTHER THING WITH WHAT YOUR TAKING RIGHT NOW, I WOULD WAKE UP IN A POOL OF SWEAT AND BE SWEATING AT -30, AND SHORT OF BREATH SO I UNDERSTAND, MSU SHOULD BE ABLE TO GET ON TOP OF THIS. IF NOT CONTACT MDA...AND YOU SHOULD REALLY CHECK INTO DISABILITY REGARDLESS OF BEING A STAY AT HOME MOM, THATS WHAT IS WRONG WITH THIS COUNTRY, OH I NEED TO STOP CAUSE I TEND TO RANT AND RAVE ABOUT THE SHAPE OUR COUNTRY IS IN AND GOING....LOL TTYL. OUR PUTERS ARE ON 24-7 AND IF YOUR ON FACEBOOK i CAN GIVE YOU MY NAME AND CAN CAHT THAT WAY. TAKE CARE.

 

[Hillbilly Hen]

Thanks Wolfwoman's DH.
I saw the new neurologist and she asked a lot of questions and did an very thourough exam. She sent me to have a CAT scan and is going to have me see a pulmnologist [sp?]and a neuro opthalmologist. She said that the occular Mg is the hardest to treat. She also said that I might be a candidate to have the surgery to remove the thymus gland since I have such problems with taking meds. She also said that the other neurologist had me taking too much meds and that I needed to decrese my dose so the side effects wouldn't be so bad. I have been short of breath some but I also have a history of asthma. The doctor said that another treatment is a cancer drug, some kind of transfusion or something.
I tried to get disability last year but they sadi that DH made too much for me to qualify and that I haven't worked enough in my lifetime to qualify. Like I said it doesn't count being a stay at home mom....like that isn't work

I got paid a lot doing that job, just not money.
I am very seldom on face book but if you PM me I will let you know where to find me.