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...
Yesterday I cried my eyes out. I am so tired of the feeling that people dont believe me. To always hear - your test are just fine, we cant find anything. We can not say that you have MG or another neuromuscular disease. But you can eat Mestinon as long as it works.
It feels like they have given me medication just to get rid of me.
I can feel crazy sometimes. I Question every part of my self.
All this makes me feel so unsure and afraid about the future. No one seems to concern about my disease or to go any further. I just live in the land of nowhere.
Thank you for the opportunity to just ventilate my feelings!
It feels like they have given me medication just to get rid of me.
I can feel crazy sometimes. I Question every part of my self.
All this makes me feel so unsure and afraid about the future. No one seems to concern about my disease or to go any further. I just live in the land of nowhere.
Thank you for the opportunity to just ventilate my feelings!
I had to travel a long way to a neurologsit who would listen and observe. When he put me on mestinon I had a huge difference. After a year he saw such a difference in my weakness he
suspected neruojunction disorder but the dr. he sent me to for testing was in my opinion not hte best tester and my results were negative.
it sound like one of your doctors was observant too and noted things that point to a neuro junction disorder. t some point if you get to the right tester you may have a positive. That means a lot. Some people are seronegative and finding a doctor who understands what that means is not easy. I hope you are able to get to the right person to help you further.
Fast forward a year and I went to another neurologist who had a fantastic tester. He spent three hours on the SFEMG and it was very positive. HE just did my EMG/nerve studies and I don't have the results back as yet but I have to say the way he did it was very more intense then anyone else. I suspect my repetitive study was different in results as well.
I have never seen a field where the attitude and experience of the doctor matters so much. Neurology is a huge field and each one only knows their little piece of the pie. Finding someone who is both well versed in your area and has the experience and confidence to think outside the box is crucial.
I am not sure if Sweden has a society for MG. There is one in the Netherlands.
http://myasthenia.org/CommunitySupport/InternationalMGorganizations.aspx
My daughter and I have had MG symtoms for over 4-5 years each and are only now getting answers. Hang in there and keep looking for a specialist with a strong interest and experience in MG and seronegative MG. Hugs, Marie
The thread "You might be an MG'er if", is lovely. I have read it before and now I re-read it. I recognize so much and it makes me laugh :)
Snowbeltfolkie - thank you for support! Hearing other people go through the same thing is the only thing holding me up, otherwise I would think Im totally crazy!
Marie - I have been through 1 EMG, 1 repetitive nervetest and 3 SFEMG. My last two SFEMG was in the "upper normal", showing increased jitter and blocking in 2 of 21 and then in 3 of 18 musclefibre. But this is not enough to say it really was abnormal. I personally think it must indicate that something is wrong... Here in southern Sweden only one person do the SFEMG, he is very old and they say he is skilled but I dont know.
You have totally right about the neurologist. I think they are a special kind. If they dont have their test showing thats wrong they always say - its all in your head or functional weakness.
I know something is really wrong in my body but its a challenge to believe in yourself then the doctors dont! Im glad you have found a good neurologist, willing to treat you!