NeuroTalk Support Groups - Six years and counting........

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Six years and counting........

Hey guys! Hope this post finds you happy and strong today!

Realized it has been 6 years since my diagnosis. Wow! 6 years! :o

When I first visited this site I was so fearful. So sad. Then I met a wonderful group of people who made je feel "normal".....what a blessing!

I have had my ups and downs. I still can't work. I do love my life, though.

MG has been terrible, but I am so grateful for being around and feeling better!!!

I have been waiting to try rituxinab. It is supposed to be a chemotherapy treatment that has had some fabulous results in people with mg.

Has anyone tried rituxin?

Erin

Oh Erin so glad this site has helped you. It sure has made me feel "normal". Not sure where my treatment is going. So far Imuran, Cellcept, IVIG has not helped. I'm not sure about Mestinon.
I'm now happy to be able to do what I can.
Mike

I'm glad you found support here and so i hope i will find it too.
Yes M:hug::hug:G can be terrible but if you find real friends you can count on in the difficult times, everything seems less heavy to carry on.
Keep writing and enjoy this group.
Cristina:hug:

I know a couple of folks who have tried Rituxan. One had absolutely no results, the other had some nice gains. Be sure and have the test for the JC virus prior to making your final decision.

Good luck!

:hug::hug:

Quote:

Originally Posted by erinhermes (Post 888109)

Erin, This is my very first post on here but have been peeking in for years. I laughed with you and cried with you my friend and know all you have been through lo these many years. Missed you when you went AWOL and was delighted when you returned. Glad you are feeling better and popped back in again. Of course my MG is NOT a car....and have had it for many many years. No meds for me though..they tend to make me sick....and in addition ...life long leukemia which came out of remission about ten years ago. Meds for that start in about a month after bone marrow biopsy....ouch ! I weigh 85 lbs so my energy level is nil. Just wanted to say hello and let you know someone out here was with you every step of the way. Be well Erin. Fondly,Flip AKA Phyllis :hug:

This site is a blessing with a bounty of info. I am so grateful to all for the insight into this disease. I personally know no one else with MG and while I wish none of us had it, being able to be in contact with others with MG on this site has been such a benefit and am truly grateful.
Have a great day Erin!
Al

BIG Hugs to Flip :hug: and sending prayers your way as well. My brother was diagnosed with Leukemia 6 months ago. No treatment needed right now because of the kind he has. He's not having any symptoms and the oncologist says that nothing should really done right now. My thoughts are with you.

Ms. Erin... When you're in the struggle with MG it feels like an eternity then you realize that years have gone by! I pray that the new treatment will help you more than the others have in the past.

Keep us posted on how the new treatment goes. As always, you are continually in my prayers :hug:

Blessings,
Shari