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...
I was diagnosed via blood test approximately a month and a half ago. A month ago I had thymoma surgery removing thymus, benign tumor, and left frenic nerve off of lung. After surgery had few problems swallowing, until now. I have lost 25 pounds, have tried pyridostigmine, which worked for a bit and then I had diarrhea so stopped. Now I am wondering if I was dehydrated more than side effect. Neuro put me on prednisone 60 mg two weeks ago. That hasn't kicked in as I just got home from 3 day stay at hospital for IVIg treatments. Had relief soon after but short lived. Now I've been home from IVIg treatment day two and I can hardly swallow. Took 2 hours to get prednisone tablets down. I also have hypothyroidism. How is one to survive before anything starts to work? I am trying to be positive and patient but I am at my wits end. I'm scared, my husband and three kids (16, 12 &8) are freaked out. We farm and my husband needs to be in the field. The parents are trying to be helpful but is all very stressful. Any suggestions? Will I be hooked up to an IV for the next 3 mo, 6 mo, year? Hospital is an hour drive away. Help and thanks.
xmas25
Look on mgfa website. It lists state by state supports groups. Mine even gave phone #s or email addresses if someone wanted to help if group was too far from home. I emailed another mger who had multiple issues. She died from another condition but it was helpful.I did go to my group but it's 1 hr away on Sunday afternoon. My husband even liked meeting other Mgers and family.hope you're feeling better.
ajkmom3
Well I just got back from colcult with radiation oncologist. I need six weeks of treatment five days a week to take care of rest of thymoma. Anyone have any experience on how happy radiation makes mg? What a fun summer this will be...ugh.
jessicadrummond
I'm so sorry! I didn't need radiation, but maybe that's why you have had such aggressive symptoms!! Hope that this will all help you recover! We will kick this! Thinking of you!
rwclark
Fatigue is a big problem with this. I know you have a lot on your plate but you are going to have to change your life stile and have more help from your family. I over did it and ended up in the hospital and almost died. I am trying to adjust my life stile and it is hard. I am a 78 yr old male retired thankfully without much on my plate. Wishing you the best.
ajkmom3
Thanks everyone. Had my second radiation treatment today. So far, so good...fingers crossed. Yes tired but I think that's going to be the way it is for a while. Had cleaning people clean my house today...first time for that. One benefit lol. Learning to schedule nap time for me in my day. Not always easy but I know when I don't.
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