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.
What an ordeal.
When I increased my pyridostigmine a few years back I had diarrhea so experimented and found I needed to take every morning four pills of over the counter generic Loperamide hydrocloride which is anti diarhealand that counters the probelm. Many of my neds cause side effects I have to counter with something else. It is an easy fix for me. Plus always take pyridostigmine with something even if it is a glass of water. It should not land on an empty stomach or you will cause problems.
As for swallowing. I have dysphagia. Also had surgery on my throat. It helped to get swallow therapy and change my diet.
There are some things I cannot eat so don't like lettuce and rice.
I do better with thicker liquids and make a lot of fruit smoothies.
Hope some of this is helpful to you. so glad you are getting some help. Do get swallow therapy if possible. I had swallow studies too through ear nose and throat. Good luck!
My treatment plan has changed so much in the last two years as I have learned what works for one does not work for all. I'm now on Mestinon 60 mg 3x per day, Prednisone 20mg per day and I have IVIG treatments every 3 weeks (3 days @ 5 hours per day).
Through all of this I have found that staying strong emotionally and mentally is almost as hard if not harder then what I experience physically. I recently joined this support group to learn and understand what other MG patients are experiencing. I don't know anyone in my area who has an MG diagnosis and the support groups are few and far between.
I'm hoping that your last appointment gave you the answers you were looking for.
It will take a long time. It was almost a year before I felt the cellcept benifits.
I had an attack in March and on ventilator.
I was resting so so much the next summer. You will get better.
Just keep resting. Be glad you are alive.
Stress isn't going to help.
You need to rest and the prednisone will kick in but this is all going to take months.
Rest rest rest
Be grateful to be alive.