Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Refractory Generalized MG

barb4serenity
barb4serenity
I signed on to this group quite awhile ago. Lots has happened since. Nothing good unfortunately. I have struggled through many different treatments, none of which helped and all of which made me worse. At least for several days or weeks....I am now seeing a neurologist in NYC who specializes in MG. It seems I have a progressive form of the disease with central nervous system involvement. I just don't know where to go from here. The MD wants to try Rituximab next but I am SO VERY tired of feeling so sick. I have been dx for 7 yrs and symptomatic for about 20. The late dx may be a reason for the seriousness of my disease process. I am holding on to my job but running out of sick time. I can't afford to go out on disability without giving up my home.....my job and my friends and colleagues there are my primary support. I am terrified of what will happen to me...I can't believe I have worked in a clinical position for more than 20 yrs with patients who have serious neurological issues. I have helped many through devastating injury and disease. I am running out of what to do with me. I am going to try going back to work Monday. I have been out for 1 1/2 weeks due to side effects from Imuran. I LOVE my work. I am 57yo and was planning to retire at 66 with SS & pension. I would have my townhome almost paid by then. At least financially I would be ok then. I am loosing my will to fight....I am SO very tired.....Sorry for emoting.....Need some support. Thank you for listening.
deleted_user
deleted_user
I am very sorry you are going through this. There are other members here who have tried many therapies who will share with you. Hugs.
mgot
mgot
I am the same age and am struggling with similar feelings. I know that if we can hold out a bit longer the Drs will find something that will allow us to hang in there, sure does not seem like it now though.But have felt like this before and managed to beat the MG back down.
ray2me
ray2me
barb4 , I am in the same boat as you , I could not handle imuran either and was changed to celcept . It was much easier on me and I had better results . Good luck, Charlie
ahpotts72
ahpotts72
I am really sorry to hear about your situation. I have not had a lot of different treatments but many here have and they have shared their successes in various posts. I hope that you will find something in those posts to help you out. I pray that you are able to hang on until retirement so you can be "okay". I know how much planning must have gone into preparing for your retirement and I wish I had some words of wisdom. Unfortunately, I'm quite a bit younger and I'm praying that I can just save up enough money to take care of myself if I should require a prolonged absence from work. This is a pretty difficult thing given that my husband is unemployed.

I am sending hugs your way and hoping that you find a way around the MG so that you can secure your retirement.

Aloha,
Angie
barb4serenity
barb4serenity
I am having trouble seeing the screen to type because of the tears streaming from my eyes. Yours words of kindness and support are so very welcome. Thank you for reaching out to me. It truly helps. I have connected with a very kind woman who has MG and is on the Board of Directors of the NYC based National MG Foundation. Other than her and despite over 20yrs working in Neuro rehab I have not met anyone else with MG. There are SO many fears.....feeling so awful from the treatments that haven't worked, coping and carrying on with some sort of life and fear of not having the finances if you are unable to care for yourself. I have such a small support network. Some really good friends but they have their lives too. I have no family I can depend on. I always was the one taking care of others.....
joefnh
joefnh
Hi Barb and welcome to the group. Im so sorry to hear about your story and the frustrations you are facing. This can be hard at times, you certainly have found a great group of people here.

I was just diagnosed this past April and am also struggling with being able to work. Its been quite tough to be able to work a full 40 hour work week. I've adopted the the phrase "MG is Strong, but I'm Stronger" Actually that quote is from another member here Cindy123.

Besides Imuran what other treatments have you tried, Imuran is certainly not for everyone, but fortunately there are several other treatments available.

Take care and welcome to the group

Best of Wishes & Hugs

Joe
txkiki53
txkiki53
Welcome Barb,
So can understand and relate. I have been on most everything, cellcept, imuran, last prograf both generic and name brand which caused mt kidneys to start shutting down have been off it for 2 weeks now. I got approved for rituxan and will get it Friday . Nervous, but have heard many good reports.

My doctors keep wanting me to quit work, but we would have to move in with our kids but they don't have room. So I will keep on keepin on for now. Sending good thoughts soft hugs from Texas
Annette
skidoomt
skidoomt
Hi Barb -- I am another Barb with generalized refractory MG that just had the exact same meltdown in the middle of an ER visit yesterday. I too continue to work -- I am however considering medical leave. Breathe deep and know you are not alone.
newmugg
newmugg
Barb, welcome to our MG family!
So sorry you are having such a hard time finding the right treatment for your MG. I know how tired and frustrated you are with finding the right treatment. For some of us, we waste so much precious time waiting to see if a treatment will work only to have to start over again with another.
Tell us what treatments you have tried. Have you had any luck with IVIG or plasmapheresis?

Rituxin will take 2 infusions. Plan on taking the day off for each infusion. Many have had good success. I had 3 infusions during a crisis. I think it's worth a shot.

Hugs
Sherry
mathewsc3
mathewsc3
Sorry to hear about your home. Funny thing this MG just when you wanna give up it leaves u alone for a while. Well not completely. When you try a new medication or therapy are you able to stay of them accept mestinon of course and give your body a rest? I am doing that now before I try ivig. Good luck
barb4serenity
barb4serenity
I can't tell you all how wonderful it feels to have people around who truly get what you are struggling with! Thank you is NOT enough! These are all the meds I have tried....none have worked: Thymus gland removed when they removed the malignant thymoma, Mestinon, IVIG for 1 1/2yrs, cellcept & Imuran. The NYC doc wants me to try Rituximab next. I will have to see if I can get the treatment where I live and if my local MD will oversee it. Right now I am glad to be pretty much over the side effects of the Imuran and happy to be back to work. I know that what docs do is try to treat what ails you but I need to feel OK too. Being sick all the time and unable to work is not a quality of life I can accept. I want to work as I love my job and co-workers and I need to work 'cause I need the money. Really want to take a break for awhile but because I have a form of MG that is degenerative and includes central nervous system involvement the docs want to get me on something I can tolerate to stop the progression. I guess I will give myself this week and call the local neuro next week.....I will have to build up sick time too.

Again thank you to my new friends!
megan2626
megan2626
Hi! I am so sorry you are going through all of this. I just found out I have MG on Friday and my sick time is running out so I know that feeling of dread..like whats next. I really hope this next treatment works for you.