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 having ocular myasthemia gravis a couple of weeks ago and have a couple month wait to see a neurologist to get a base line on the blood test results for something I can't remember. So far, mild double vision and ptosis of my right eye that is becoming annoying and a concern about safe driving. I did discover one useful thing to do to cope...When watchin TV, I use a band-aid to hold my eyelid up and allows me to blink easily.
Thx for the tip on putting tape on one eyeglass lens.
QUESTION: Do either of you experience eyelid swelling and itchy eyes along with the eyelid droop. I have another auto-immune disorder, chronic urticaria, and I'm wondering if the two are connected. Google images of MG eyelid droop didn't show much if any swelling.
MG is a hard diagnosis and the first year is the hardest as we try to get into the medical system and find a neurologist who knows about MG. Most of us have our worst problems at the beginning while waiting to get treatment started.
I went from your symptoms to hospitalization in about 4 weeks for a breathing crisis. Some MG progresses slowly but most of us it comes on rapidly with the symptoms you have showing up when we are quite far into the disease.
That means you really cannot wait to begin treatment. You must insist your symptoms be addressed immediately, start on pyridostigmine (Mestinon) and get a treatment plan underway.
My ocular start, went to having difficulty chewing my food, and then getting out of breath with even a little walking, and even my fingers having trouble typing-- and this happened in the first month.
If you are not on Mestinon, you need to put a great deal of pressure on your doctors to start you on it. It will keep your symptoms somewhat under control and out of a hospital while waiting for the actual immune system treatment to get underway.
MG is rare, doctors who know how to treat it are rare, and so you have to really be pushy to get into the system and under treatment. You should also find the biggest, highest reputation integrated medical center in your area if you want to get treatment that your family doctor and specialist actually talk to each other and coordinate things. If not, this coordination can be very difficult. It also assures you when your family doctor wants some advice, it is immediately available from the specialist inside the institution. (I use Mayo Rochester).
Pick your treatment center and go there and go to the neuro appt desk and insist on an early appt. I did that, agreeing to see a resident (doctor in training) when my appt for a staff neuro was still weeks away and I was scared about my condition. The resident was great, and after seeing him got to see the regular doctor who had to approve the resident's plan for me. Saved me 3 weeks wait.
The other direct route into a large treatment center is to go to the ER. That does get you through the door too--if it is big enough place to have a neuro for the ER. They can cut through the appt delays and put you to the top of the list.
Good Luck, and don't be satisfied to wait for weeks to begin treatment. There is really no excuse for a medical center not doing that immediately with MG. Most of us have progressive MG (some don't) and without treatment, about 40% of MG patients will die in the first 2 years (the statistics from the 1950s). With treatment most of us do well.
Russ