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...
Hi all! I am new to all of this so please bare with me. In late June my right eye started to droop, so I went to my Opthamologist who after several visits referred me to an Opthamologist/Neurologist. She ordered a MRI, which came back normal. Then she ordered a ton of bloodwork (antibodies). Well on Friday one of the other doctors in the practice called and said my TPO level was 140. Then kept saying it was MG, which I had NEVER heard of prior to Friday. Now after looking at a ton of research I have many of the symptoms....fatigue, muscle achiness, shortness of breath etc. Plus my thyroid glands are very swollen. I have an appointment on Friday, but I am not sure if I can wait that long....what are your thoughts???
Welcome and sorry that it is autoimmune disease that has sent you here. Both MG and thyroiditis are treatable conditions. Many people here have more than one autoimmune problem and thyroid disease is something people with MG need to have checked because some of the symptoms are similar and because once you have MG, that is the most frequently reported other.
Friday is not too far away unless you are having breathing problems that need ER care. But I imagine what you mean is that you want to understand what the diagnosis means for your life and what treatments are available. Although your treating physician is the best person to ask, the answer to the first (apart from statistics) is really we don't know and treatment discussions will depend on you, your findings, and your doc. But meanwhile, ask away.
b.
B shared many excellent words of wisdom. You can count yourself fortunate that they were able to tell you so quickly what the problem is. Sometimes it's not so clear cut and you end up spending a lot of time with doctors searching for the cause. Now you can go in and hopefully proceed with treatment.
Make a list of your questions.
Be ready to go through more testing if your neuro wants to look a little further.
Go to www.myasthenia.org and read up on MG and treatment options.
The more you know going in the better prepared you will be to ask questions and get answers.
We are here to help anyway we can. So sorry you are in this spot.
Cathi
Welcome to our group. We have a great group, with members all over the world and all ages.
This is a very supportive group. Our members are very knowledgeable about MG and very willing to share their experiences. We learn from each other.
I noticed that you are seeing an Ophthalmologist/Neurologist which may be fine for Ocular MG. I noticed that you stated you are also having symptoms that are considered Generalized MG.
I suggest that you spend time making sure you have the right doctor to treat you. An Opthalmologist/Neurologist may not have the knowledge and experience to treat someone with generalized MG.
Do not be shy about asking the doctor about his/her knowledge and experience with MG. Make sure they know you are also having symptoms that may be generalized MG.
MG is so rare most Neurologists have very little experience. MG is both a challenge to the patient and the doctor treating the disease.
We have numerous members from Texas. You may wish to do another post which asks for help in finding the right doctor in the Houston area.
Wishing you the best.
Bruce
Welcome to our group!
Love, Becca
Ann
I am from the Dallas area, but I have made friends with a lady that is in your area, let me check with her to see what doctor she sees.. Her name is Norma. It may take a few days for her to respond.
I agree, that you were lucky to get diagnosed so quickly, sadly others it took a while. I wish you much luck on this jourrney of MG, but this group is awesome..
Annette
Welcome to this group! I am a recently joined member and find everyone to be so overwhelmingly supportive and filled with knowledge about MG and everything it encompasses. If that is what you're facing, be assured you can find great comfort with this group. I hope your doctor appointments go well and you get the answers you need to progress towards treating your condition.... All the best!
*Aimee*
You have been and will continue to go through lots of ups and downs with regard to MG. Many of us call it the roller coaster. Just know that you can reach out with questions and vent frustrations here. Sometimes the best thing to learn here is the right questions to ask.
Good luck, I am sending positive vibes your way.
Kimber