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Myasthenia gravis

Looking to talk and get information from people with Myasthenia gravis. Did you get told your a drama queen or back stabbed by what you thought were friends? Do you get pip?
Replies
Im sorry I dont know much about Myasthenia gravis, it sounds like you have had a tough time with the people around you.
PIP is not about the impairment but how it effects you on a day to day basis, you can fill in a PIP self test here to see what you could potentially score.
Senior online community officer
Im not sure if you have seen this already, but there is a website about Myasthenia and it also has support groups,
Senior online community officer
Thank you for your message , over the years I have had stroke like symptoms with the dropping mouth on the one side also my eye taken into hospital had tests and send home then one day I was not feeling very well again I went to A&E but this time a doctor tuck great interest in me and he said you have Myasthenia Gravis but No one will hear me out so sorry .
I have been feeling very tired for over a year and my doctors tuck no notice just blood tests but all come back clear .
I Also went to see an ENT doctor no arranged for me to have some tests on my mussels that test come back.positive but my neurologist will not commit her self to Myasthenia Gravis for some time I have been having breathing problems I can just get out of breath even when resting , my neck cracks when I move my head my head feels heavy I have dizziness daily and some days feel faint .My neurologist says you don't the them symptoms with MG.
But everyone i talk to says you do even Myawere support tells me you .
I should be having a call next week from her but I will have to wait and see .
Please keep safe .
@littlechef I'm sorry you having a hard time. My MG started with the ptosis of the eyelids. It's a horrible disease. I have seen a recent ad campaign showing the faces of people with MG, I had hoped that it was better understood nowadays. I'm not sure how easy it is to diagnose with a blood test. I think they must use that along with the other muscle tests. I just had a quick look online and read that it's common in over 50s. When I was diagnosed I was told early 20s was the most common age. Obviously it was many years ago but I joined a group in my local area and we used to meet up in someone's house. I found that helpful. Obviously those were the pre-internet days so of course I am sure there is much more online. I did not have a problem with my memory but of course everyone will be affected differently. All I can say is to keep pushing your neurologist for a true diagnosis. Unfortunately as it is still a rare disease I imagine that they do not see lots of patients with this. Feel free to pm me with specific questions and try and keep using the forums for support. I had a quick look and there seems to be a lot of those now. If possible I would stick to the UK forums as the healthcare in the USA is very different. Good luck.
I'm not sure whether they still carry out thymectomy for this disease. If they do please be aware it is a major operation where mine was carried out by median sternotomy. My recovery time was several months.
Thank you for your message my neurogest should be calling me next week but to be honest I don't have a lot of trust in her but my doctor tells me that only my neurogest can help me my breathing is not the best keep getting breathless so I do hope she does call me.
Thank you once again take care.