Myasthenia Gravis Support Group

No personal response (but huge sympathy for you and your daughter). This might be a great question for the diabetes site. Yes? Good luck. Sarah

Well, my daughter went for another plasma exchange today. They were able to get the needles into the fistula and get it to run. We are so excited that this one was successful. We have another one scheduled for Wednesday.

Why plasma exchanges and not IVIg and why so many? Just curious (and want to add to my knowledge base). Thanks. Sarah

I am curious as well....we have just heard about IVIG....we hope the Imuran works, but like Sarah100...it is good to be somewhat informed...NanaMar....I hope your daughter spirits are better! Tell there is a mom in Iowa on her side!
Blessings!
Sandy

i hope all is going well. as a mom i know how hard this is for you ,daughter and the whole family unit[i hope there is alot of loving and supportive friends and family] remember many people here are pulling for your daughter and want to help-even if it's just venting or the knowledge this group has as a whole take care!

We were successful with the second exchange on Wednesday, but it took many needle sticks. They are going to do a fistulagram on Wednesday, July 8. With that they will be able to tell if there is a narrowing of the artery or blood clot or what. We know the blood is flowing through, but for some reason they are having difficulty getting it to draw. This procedure carries some major risks. As best as I can tell from what I have read and been told, it is similar to angioplasty.
I asked the same questions about the IVIG. Our doctor said that we know that the plasma exchanges work for her and we don't know if the IVIG does. The exchanges are more economical than the IVIG also, I believe. We are seeing a big difference with the 2 exchanges that she had last week. She is taking much less mestinon each day. She had lots of success with Imuran from 98 or 99 until 2003. She went off of it, had a baby, and did well without going back on it until 2006. After her second pregnancy, they put her back on Imuran. She took it for almost 2 years without getting any benefit. They did a blood test about 6 months ago and found that it was not helping this time. She is now off of the Imuran, but continues to take the mestinon and prednisone. They would like to get her off the prednisone because of the side effects, but right now she is struggling even while she is on it. Thus the continued use of prednisone, mestinon, and the plasma exchanges. Thanks for all of your thoughts and prayers. Nanamar

Thanks for the info. How did it go today? Sarah

Today was not a good day for us. The vein that was used to create the fistula does not go all the way up her arm. It is unable to support the return blood. They are still going to try to do an exchange tomorrow using that artery and trying to find a vein in the other arm to use for the return. The surgeon that did the fistula is also supposed to call her tomorrow with any suggestions that she might have. Her mg neuro mentioned putting her on cyclosporin (I don't think that is spelled right). That is very frightening to me because of its many side effects. Just keep us in your prayers.

So sorry! What a nightmare. And I would be worried about that drug, too from what I've read. You would think with all the diabetes, chemo etc. there would be a better solution for the vein access. Do you think maybe a "cutting edge" children's hospital like St. Jude's might have a creative solution to a problem such as your daughter's? (I realize she's not a child but the children's hospitals tend to look "outside the box" a little more.) Best wishes. Sarah

Ladies...work has been very busy, and while I may not post often, please know that I think of you and your daughters on a daily basis and pray for the healing touch!!
Blessings!
Sandy