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 am so scared, have so many questions and have absolutely no support. I started telling doctors about a year ago that I was weak and tired, they sent me to sleep studies and also a cardiologist where I found out I had blockage which they did a cardiac cath and put in stents....so I should be all better now, then all of a sudden double vision, so I went to eye doctor that said my eyes are fine and referred me to a neurologist that told me a I needed prism glasses which I got and they helped me see while I was driving, but still had blurry vision when not wearing them and could not stay awake for longer My boyfriend told me to leave because he could not handle my "laziness" and I moved in with my mom who does not understand why I can not help that much cleaning the house or why I get tired walking to my room which is an 18 stair walk upstairs. I have a hard time doing small things like taking a shower or walking from my car to the pharmacy to pick up my prescriptions and I can see it in my mothers face that she just thinks I am being lazy and "maybe if I just exercised I would feel better" I am 46 years old and there is already talk of putting me in some kind of assisted living. There are no support groups close and even my doctors have not had enough experience with the disease I won't be able to do this without at least one person on my side.
I just lay here waiting for the next symptom to happen or a flare or crisis that I have heard about and I will have to go through that all alone
Any advice of what to do or who to talk to?
I just lay here waiting for the next symptom to happen or a flare or crisis that I have heard about and I will have to go through that all alone
Any advice of what to do or who to talk to?
For me personally, I have made use of a very considerate church that although they cannot solve my health problems, they do let me know they care and pray for me.
Hope you do well.
Good luck and stay strong, Sending you positive vibes and hugs!
Flutebell
It is very hard learning what you can not do.also what is a good day for you. hope you get a good doctor who is willing to work with your neuro. doc.I live alone and my neuro doc is a great help who i can call anytime if I have a question.yes is there is things I can not do any more so just hang in there and things will at the very least change.
good luck
Chuck
Linda
Welcome to the group! Hope you get some good advice here and some support.
in May of 2012, I was diagnosed with MG after some problems with fatigue and finally when I got double vision and my eyes didn't want to stay open anymore. I had a positive blood test, so there was no delay in the diagnosis.
The first 6 months were the worst I crashed and was in the hospital for difficulty breathing (just not taking enough mestinon -- I needed a pill nearly every 3 hours to be active and breath). My neuro started me on prednisone too which over the next 6 months cleared up my MG symptoms as I got to 60 mg/per day. Then the next 6 months were tapering prednisone to find out the minimum dose needed and also we were considering switching to something other than prednisone as it was pushing me into diabetes and high BP and other problems. But it was fast to get me functional again!
I was lucky as one of the 15% that go into complete remission after a year and I am off meds now for 3 years, however my neuro says it may come back at anytime. I know that if I take prednisone, it will knock it down again in several months, and things will smooth out OK, so it doesn't scare me now. My neuro was at Mayo Clinic Rochester, MN and I thought she was great.
Get to the neurologist as soon as possible--find one who is MG familiar. If you call to make an appointment, tell them you are already diagnosed with MG, rapidly failing and need immediate help. Mayo, like other places, gives appointments based on the patient condition as well as other factors.
You need to be under the care of an MG experienced neuro now.
A direct route into care can be through the ER. The big ERs have neurologists available and can get your through to the right support directly. Neurologists are terrible to get appointments with, so when I got my first one at Mayo Rochester, I went to the neurology desk and insisted I get an appointment sooner than the month they listed with any neurologist, not just the MG specialists, trying to get my foot in the door.
I told them I was rapidly failing (I was already having trouble chewing and talking as well as breathing and everything else).
As Mayo is a teaching hospital, the desk attendant offered me a visit with a resident (learning) doctor in his 3rd year at Mayo, getting ready to move to full status soon. He was great! He not only spent nearly 2 hours with me explaining everything and testing my abilities, but then his mentor (a staff doctor) came in and reviewed it all, and got me an appointment (7 pm) a couple of days later. He said he was not the MG expert, but knew to put me on mestinon and prednisone, and got the MG expert appt lined up sooner than planned.
Mayo Clinic is an integrated medical center. Once you have a foot in the door, whether it is through a family doctor or physician assistant or ER, then everything connects automatically after that. Although I now live 3 hours from Mayo Rochester, MN, I still use it for most of my medical care just because everyone you see is connected and the records are also connected and things are vastly smoother that way. Any big clinic/hospital likely works this way too.
Good Luck