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, My name is Gina. My optometrist believes I have MG and I'm working on seeing if he is correct. I have an appointment with my primary doc the 1st week in November. Any advice on what questions I should ask?
When I am tired (almost every late afternoon/evening), my eyes droop and my eye lids close partially (I can't open them any wider). I have some double vision. I also have breathing problems (like air hunger) where I feel like I really have to work to breathe. It's like I can't take a complete breath. Sometimes yawning helps (weird, I know). This started about 4 years ago. Prior to this, I was diagnosed as being hypothryoid (Hashimotos) and I thought the symptoms of being tired, etc, were related to that. Then I became pregnant. I seriously felt like I was struggling for air most of the pregnancy. I was told it was in my head (so I switched doctors) but no one was able to help me. My full term, otherwise healthy daughter was in the NICU for 2 weeks, as she would stop breathing and none of the doctors was able to diagnose her. It finally subsided and she came home with no further issues (she is 3 now). In my research, I found that the mom's with MG have antibodies that could cross over to the placenta and this could last for 2 weeks. I'll be honest, the research that I've done on MG is scary. My lifestyle has already changed drastically since my thyroid issues and I'm afraid it is not getting any better.
If you have any advice on good sites to look at, etc. I would love it. Thanks so much for taking the time to read this.
When I am tired (almost every late afternoon/evening), my eyes droop and my eye lids close partially (I can't open them any wider). I have some double vision. I also have breathing problems (like air hunger) where I feel like I really have to work to breathe. It's like I can't take a complete breath. Sometimes yawning helps (weird, I know). This started about 4 years ago. Prior to this, I was diagnosed as being hypothryoid (Hashimotos) and I thought the symptoms of being tired, etc, were related to that. Then I became pregnant. I seriously felt like I was struggling for air most of the pregnancy. I was told it was in my head (so I switched doctors) but no one was able to help me. My full term, otherwise healthy daughter was in the NICU for 2 weeks, as she would stop breathing and none of the doctors was able to diagnose her. It finally subsided and she came home with no further issues (she is 3 now). In my research, I found that the mom's with MG have antibodies that could cross over to the placenta and this could last for 2 weeks. I'll be honest, the research that I've done on MG is scary. My lifestyle has already changed drastically since my thyroid issues and I'm afraid it is not getting any better.
If you have any advice on good sites to look at, etc. I would love it. Thanks so much for taking the time to read this.
I was diagnosed 11 months ago with MG. I also have Hashimotos. I have not had any problems/symptoms from Hashimotos. I take 75 mg levoxyl daily and my thyroid levels are fine. Are you taking synthetic thyroid???
MG can be scary in the beginning. I have not had breathing issues at all at this point. As a matter of fact, I can jog, walk 4 miles with my dog, keep up with my kids, work again, etc. This was not the case 5 months ago. When first diagnosed, I quickly became very disabled. Chewing, swallowing, smiling, and talking were almost impossible and my main symptoms.
It is very important to get a good neurologist. You will need to get the blood tests to see if you are positive to the AcHR antibodies or the MuSK antibodies. They will probably recommend a CT scan of you thymus gland, etc. It all sounds scary at first. For me, the first 6 months were the worst and then things started looking up. Everyone with MG has different symptoms and response to treatment. I did go on prednisone, mostly because the doctor prescribed and I wasn't in any condition to opt for a slower acting medication. I have not had any problems with any medications required. In short, find a GOOD neurologist, I am not so sure about a GP???? For me, with treatment, I have turned 180 degrees. I am no longer fearful and have learned to make the most of every day.
Good Luck!!! Keep us posted.
Robin
Go to www.myasthenia.org and www.MDA.org for lots of good information. The first website, MGFA, has a downloadable book for healthcare providers that is full of excellent information. Go to the healthcare professionals tab on the home page and select educational materials from the drop down menu.
Cathi
Mestinon seems to control the ocular symptoms - you may have to try different dosages.
http://www.Myasthenia.org is a good site. Make sure you carry the list of prescription meds that aggarvate MG symptoms. Stress is the enemy - get lots of sleep and drop unnecessary commitments - but it will be tough letting some things go.
I had Kaiser at the time I came down with Hashimotos and unfortunately they were unable to diagnose me (even though I went through half a dozen doctors) until I changed insurances. By then, I had no detectable thyroid in my body and was going into congestive heart failure and I was not functioning well mentally at all. I believe because it went on so long, it damaged my body and I have not recovered yet (although I was diagnosed 6 years ago). I am on a very high dose of thyroid, but have never returned completely back to normal.
My general practitioner is the "gateway" I have to go through before seeing someone who can really help. So I'll definitely ask for those tests. I also did not know that an MG specialist was a neuromuscular specialist, so I'll will ask for a referral to one of those. (I'm in Northern CA if anyone knows of a good one.)
It's so good to know I'm not the only one who was told it was in my head. I am so thankful I found this group. I did not realize meds can aggravate the condition, so I'll definitely look into that immediately.
Thanks for all the help! It is greatly appreciated!
I would suggest you call your doc and let him or her know you are having breathing issues and that your optometrist believes you have MG.
Maybe they could make the referral to a neurologist immediately or get you in immediately.Then you could let the neurologist know you were having breathing issues also. They usually take breathing issues seriously because it is serious.
Ann
I'm with Ann. Let them know about the breathing difficulty and possible MG. I had to do the waiting game like you and by the time I saw the neuro it was 8 weeks. My first visit he was so upset no one called him from my GP to say there was a breathing concern and possible MG. He said he would have seen me right away. Ask your GP office to advocate for you and give them literature on respritory concerns in MG patients to help them understand.
best of luck,
J
I will definitely work on getting my appointment with a specialist more quickly. Thanks again for the advice!
-Gina
I like rest would push to get in sooner... you will find everyone here will become a good friend with a wealth of knowledge combination.. Good luck to you, let us know how you are doing and if you can get in sooner.. Hugs, Annette