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...
OMG! I just got out of the hospital yet again. This is the 3rd hospitalization in a month. 5 days, 7 days, and 3 days. I received IVIG each time and had an amazing response but it is not lasting long enough to get me to my next infusion.
There seems to be underlying issues causing problems, like electrolyte imbalance and mineral deficiency. I am deficient in manganese (no, not magnesium!) and it is VERY impt for MG and very rare to be lacking it in your body I hear. Does anyone else have this issue?
The last crash happened in one day....one. In the morning, I was strong but by 4:30pm my voice was the most hoarse ever and my stamina dropped by 50 % and I was losing balance and had a little weakness. Then, I couldn't walk without a walker a couple hours later and had global weakness and they admitted me because of the pattern. My breathing was ok but by the next morning, my vital capacity dropped to 1.4 (very low, should be over 3).
I am so exhausted from all of this and I am just hoping I can get a prevention plan in place with my neuro before I get hit again. Any thoughts or ideas are welcome.
debra
There seems to be underlying issues causing problems, like electrolyte imbalance and mineral deficiency. I am deficient in manganese (no, not magnesium!) and it is VERY impt for MG and very rare to be lacking it in your body I hear. Does anyone else have this issue?
The last crash happened in one day....one. In the morning, I was strong but by 4:30pm my voice was the most hoarse ever and my stamina dropped by 50 % and I was losing balance and had a little weakness. Then, I couldn't walk without a walker a couple hours later and had global weakness and they admitted me because of the pattern. My breathing was ok but by the next morning, my vital capacity dropped to 1.4 (very low, should be over 3).
I am so exhausted from all of this and I am just hoping I can get a prevention plan in place with my neuro before I get hit again. Any thoughts or ideas are welcome.
debra
I
have had similar problems with electrolyte imbalance. I was referred to a GI doctor and had a upper and lower GI study today. I had good news nothing major going on but did find out that my throat thrush has spread to my esophagus. Im now on a different antibiotic for the thrush. Thrush is a side effect of taking immunosuppressants.
Have you seen a GI doctor? What are the doctors doing to find the root cause of your electrolyte problems? Also have the doctors considered any side effects of your medications a source of your problems.
I hope the doctors are aggressive and find the right treatment or the source of the problem very soon.
Bruce
I usually get Gamunex-C but got Flebbogamma for 2 days and my ususal for 3 this time so that should be interesting.
I will ask about the other ideas, thank you!
Bruce,
I have not had any issues with my stomach surprisingly so I haven't seen a GI doc. Thrush sounds awful...sorry to hear that you are dealing with that. Those antibiotics are hell.
I am seeing my PCP today, who I have not seen in 2 years because I am never sick and I am always seeing specialists for everything. Maybe she will have some ideas or referrals for me?
debra
I am really worried about you!
It is good to be home but I wonder if you should be?
What if you asked them about PLEX as a trial? To see if it helps more?
IVIG only did so much form me and I know I have heard others here say after a while it was not as effective.
I dont know my friend but i sure hate to that you are getting weaker like this and no big treatment changes.
Keep us posted.
Love,
Jeannie
How did your PCP appt go? Really hope you got some insights into whats causing the electrolyte imbalances!
Thinking of u!
Ange
We had a nurse yesterday who has worked with MG patients since the 70's and she suggested that my antibody load must be too high with all this crisis and that what they sometimes do is 1 or 2 rounds of PLEX to clear out the bad antibodies and then 5 days of IVIG to fill up. Now, that sounds like a great idea!
Hi Ange,
My PCP is trying to get me into a nephrologist immediately but no news as to when that will actually happen...lots of blood drawn this morning. They said they were really in over their heads with me and all my unusual diagnoses. I was just happy they were willing to try to help at all!