Someone got some words that can relate to this? I am sorry your body is going through this. I wish you strength and peace.

Get well soon!

TJ

I hope someone will answer your question for you. This MG is like a roller coaster ride, but one that just doesn't seem to end. Take care and know that WE are all behind you!

Hi. I'm just a mom of a 16 yr old w/ MG but I had some comments. The autoimmune drugs usually take a year to start showing benefit for MG. The doctors also told us the same thing about thymus gland removal. The thymus gland is just part of the MG picture. I recall reading that some antibodies may be produced in the spine (bone marrow, I believe) so that is why UCLA was doing some bone marrow transplants for severe MG. (I don't know a lot of details about this.) you said you were walking in the museum. I know, for my child, she has to pick and choose where to use her energy. So maybe using a scooter type devise when needing to walk some distance might be a good idea for now. Also, some PT may give you a little increase in strength. Good luck.

Hi! Sorry to hear you are having such a rough time! This really is a horrid disease and we are all in it together so don't feel alone!

I have never had the thymectomy because of my poor respiratory function but as I understand it, the thymus gland they suspect is instrumental in seeing our bodies own muscle receptors as invaders and at throwing out into circulation antibodies against those receptors which cause MG. Once the thymus has had time to formulate this response there are cells left in the circulation with a memory so that even if the thymus is then removed some of these cells perpetuate the auto-immune response. That is why they say that it is best to have the surgery in the first year after diagnosis before the thymus has had time to launch too much of an attack and also why you still can get the symptoms post thymectomy although as Sarah says there are also antibodies produced in the bone marrow that cause MG. There seems to only be a sketchy understanding of the role of the thymus gland so no one really knows but thats how it was described in a talk I went to and it makes sense. Just to say That I have been on the drugs you are on as well. The Cyclosporine was for me the most effective but I had to stop it because of renal side effects. The immuran I am still on. Just to say that it can take up to 2 years to show it's maximum effect especially in severe disease although you may see improvements at 3-6 months so don't expect changes too soon. Like you I also have had many crises associated with tapering my pred. Hopefully the immuran and cyclosporine will eventually allow you to reduce your dose. Hope this helps! Hang in there and shout if you want to ask any questions.

Ange

Hi There,

We have all been there at one point or another. I remember going grocery shopping with double vision and about to pass out before I evn got to the check stand... but kept going. I had my thelectomy late June of this year and I am slowly tapering of the prednisone and am taking the azathorprine at this time. Personally, the lower I go down off the prednisone the weaker I am beginning to feel. I know that the surgey results will take some time before I see results, but please stay positive and know that you are not alone.

thank you everyone who responded/hugged/advised. I love this site. Just to let you know that I do feel better and more hopeful. I might have been weaker than usual that weekend as my IVIG vein/arm got infected. I had to go 3 nights to hospital fo IV antibiotics.,..It is very easy to turn into a patient with all the possible side effectsetc. from MG and/or meds. However, I will not let it and I treated myself to a overnight get away with my friend up Vancouver Island with complete dinner and spa treatment. Feel much better and hopeful. Thanks again.

Hi there,

I had a thymoma removed in March 2009. I month later I was diagnosed with mg. I was treated with high dose of prednisone 120/day and mestinon 30 mg. per day. I was weak from the thymectomy and also I had developed c-dif, but I notices immediate improvement. I have been doing great,except for the last week or so. A cat scan showed"something" in the area where my thymoma was. I am having a biopsy tomorrow at Mass General. I think the stress, plus my prednisone being lowered ( I was down to 30 mg EOD ( every other day) caused the flair. I am back to 30 mg a day and anxious about the biopsy, so not sure how i feel. I had acheived a drug induces remmissionthough,a nd felt great!