Myasthenia Gravis

Kathie Glenn · 05-17-2010, 10:26 AM

Quote:

Originally Posted by GratefulHickman

Hi Katie, I was diagnosed with MG in my arms a few years ago, side effects from meds were not worth it. I found that the less activities I do, the less the symtoms bother me. I pray things work out for you.

May I ask if your MG is anywhere else in your body? Do you have the ocular problems (double vision) as well? I am afraid to get totally off the meds, but wish I could. I didn't feel as bad before I started the pred and cellcept, that is for sure.

If you can and don't mind, let me know a little more about your situation.

Thanks so much.

Kathie Glenn

scrubbs · 05-17-2010, 11:16 AM

Quote:

Originally Posted by rezmommy

Kathie Glenn,
I guess I have some words of support, I don't know how wise they are. My original symptoms started in August 2007 and I was not diagnosed until November 2008. During those 15 months I went through a lot. The worst part was feeling depressed and that I was crazy. At the time I was 35 and the doctors couldn't understand how my different symptoms fit together. Initially they thought that I may have had a stroke. I remember being in the hospital when the symptoms first appeared and the nurse leaned close to me and said, " now is the time to tell us about any illegal drug abuse". I was so weak and stunned that I had no reply.
Until you align yourself with a good neurologist you are probably going to have more questions than answers. My first neuro was not a good fit. He sent me home to wait and see if my symptoms went away. Eventually I met a neuro who perservered with many tests, clinical observations and listened to me.
I have noticed that stress is one of the things that my MG just cannot handle. If I find myself stressed, I notice the increase in weakness immediately. I have learned to back off of being supermom and having a good support system.
I too gained 40 lbs as I was on Pred for a year. I just weaned off of it on January. I am on Imuran and Mestinon and I go for IVIG once a week. I have generalized MG so my weakness affects everything. I do know that when I feel that I am getting worse that stairs are my first indication.
Do you have confidence in your dr and the direction your plan is going in? Do you have an MG specialist in your area that you could be referred to?
I know that there are many others on this site who will respond with words of wisdom for you. If you need more support you can message me. Please take care and know that you are not alone. Melanie

Hi Melanie
I also have generalized MG that was diagnosed in Dec. 2008. Mestinon and prednisone since then. Pred down from 120 to 30mg every other day. Started on Cellcept and had my first 5 IGIVs in Feb 2009 and 2 a month since then. I have experienced everyting this disease has to offer.
I am fortunate that I have also experienced much improvement. No more double vision, swallowing or chewing problems and my stength and breathing has improved. The pain is the only thing that has been worse.
My Neuro has told me he hopes that the IGIVs can be spread out eventually.
I see you get IGIVs weekly and wondering for how long?
Have you seen improvement?
I have read a lot of post's but no one mentions how long they have been getting IGIVs.
Since I started taking Cellcept at the same time I am wondering if my improvement is a result of the Cellcept, the infusions, or a combination of both.
Maybe niether.
If you would reply I would appreciate it. Thank you.
Tony

rezmommy · 05-17-2010, 12:26 PM

Hi Tony,
I have had IVIG a few times when I was admitted to hospital for an increase in weakness and difficulty breathing and swallowing. In January 2010 I weaned off of pred after being on it for a year. My dr agreed that an IVIG schedule was a reasonable treatment plan. In Feb 10 I started my monthly treatments. I go to the hospital for two days a month as an out patient to receive the IVIG. As of today I have had four months worth of treatments.
I take Imuran and have been on it since Nov. 08. My dr originally told me that the Imuran takes at least 6-9 months to start to work. It is really hard to say what is working at what time. In between I have had the full sternotomy thymectomy in Feb. 09.
I believe that the meds of Imuran & Mestinon and the IVIG are working together to keep me going. Prior to diagnosis I was pretty much in bed or on the couch because of severe weakness.
Not really sure if this is helpful.

Melanie

jfly · 07-09-2010, 02:25 PM

Jmount, I am curious as to how your were in the military with MG either in or out of remission. I can not find any information on what my future with MG holds as far as continued military service. Can you emal me, I have a few questions for you.

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