-
Celeste M Matthews replied to the topic Sports and MG in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 2 months, 2 weeks ago
I ride my horse. It is more complicated than it used to be. First off, I can’t get on the horse without a mounting block. That means that when I ride off, I really need to stay on the horse. I have to call for help if I fall off. I also had to modify my saddle so that my stirrups hold still. I cannot go a long distance. I am able to enjoy riding…[Read more]
-
Celeste M Matthews replied to the topic Actual Results using Vyvgart in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 5 months ago
Hey Amy,
What do you think made your aunt sick before all the medication? I am seronegative, and I always have a feeling of doubt that the diagnosis is correct.
Celeste
-
Celeste M Matthews replied to the topic Is MG hereditary? in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 6 months ago
My neurologist gave me the opportunity to be involved in a genetics study. (It was not at her hospital.) The lab said that I had two different genes that are known to cause MG. The thing is, they are recessive. I only had one copy of each. So I should not have it.
My grandfather was diagnosed by an old country with MS back in the 40’s. There were…[Read more]
-
Celeste M Matthews replied to the topic COVID-19 Vaccine Booster Shot and Myasthenia Gravis in the forum Coronavirus (COVID-19) and Myasthenia Gravis 6 months, 1 week ago
I had a total of 5 shots. The very first Pfizer that came out, 2 doses. Later when they said we need boosters, 2 doses. Of course spaced out like it was supposed to be. Then some time in October, I had the newfangled fancy “bivalent” Pfizer shot. No problems at all.
However, my 35 year old son, who is as healthy as a horse, had numerous vaccines.…[Read more]
-
Celeste M Matthews replied to the topic Breathing problems in the forum About Our Forum/Welcome Lounge 6 months, 3 weeks ago
I have been diagnosed with seronegative MG. I have eye problems, voice problems, swallowing problems, overall muscle weakness, and really bad breathing problems. Nothing so far has helped me all that much. I still push myself to do things.
I am discouraged.
-
Celeste M Matthews replied to the topic Do you have Seronegative MG? in the forum About Our Forum/Welcome Lounge 7 months, 3 weeks ago
I am seronegative. I have been through many doctors over the last 10 + years. I have had all the diagnostics imaginable. I have the wonky eyes, severe shortness of breath, when I am tired my ears stop up and then my soft palate drops and I cannot speak normally. I can walk. I cannot hike because I cannot go up hills. I have extreme weakness in…[Read more]
-
Celeste M Matthews replied to the topic Do you have Seronegative MG? in the forum About Our Forum/Welcome Lounge 7 months, 3 weeks ago
The abbreviation “SOB” always brings other things to my mind than “short of breath”
-
Celeste M Matthews replied to the topic First Signs of MG in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 8 months ago
For a good while, I thought that I was having severe allergy reactions. My eyelids drooped so bad that I could not see. I had surgery to attach my eyelid to my frontalis muscle. It really helped.
Then my legs became week. I have double vision up close, but I can see at a distance. I have had so many neurologists. I am seronegative, but my current…[Read more]
-
Celeste M Matthews posted a new activity comment 8 months, 2 weeks ago
Thank you. I just now saw your welcome.
-
Celeste M Matthews replied to the topic Hey all! in the forum Additional Resources 8 months, 2 weeks ago
“If it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck. ”
Jane is correct.
You have MG. If you have a positive antibody test, it is a no brainer.
You have all the symptoms. You can’t have a false positive test. You can possibly have a positive test and not happen to be symptomatic. You can have a n…[Read more]
-
Celeste M Matthews replied to the topic Imuran (Azathioprine) and Side Effects in the forum Healthcare and Myasthenia Gravis 9 months, 3 weeks ago
Both Imuran and Cellcept caused me all sorts of problems.
High blood pressure, High blood glucose, Extreme weight gain, water retention, and the best one, my liver doubled in size. Yes the doctors should have kept up with my liver enzymes. They did not. They did not do anything except for 3 month checkups. I went through 4 neurologists before 1 r…[Read more]
-
Celeste M Matthews replied to the topic Describe Your Journey With MG in 3 Words in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 10 months ago
It really sucks.
-
Celeste M Matthews became a registered member 10 months ago
Hello, Celeste! We are thrilled to have you as part of our inclusive and judgment-free community of MG patients, caregivers, families, and medical professionals! Within the Myasthenia Gravis News Forums, we implement a safe space to share and discuss experiences, information, and news and offer guidance and support.
Please familiarize yourself…[Read more]
Thank you. I just now saw your welcome.