Myasthenia gravis

steff06

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? 

Sam_Alumni

Welcome to the community @steff06
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.

Sam_Alumni

Hi @steff06
Im not sure if you have seen this already, but there is a website about Myasthenia and it also has support groups,

littlechef

Hello everyone I was just wondering if anyone is still here with myasthenia gravis that wants to chat.? 

Cressida

@steff06 I was diagnosed with myasthenia gravis 40 years ago and as you know it is not curable but I have very few symptoms nowadays, only when I am extremely tired. It took a while to diagnose me. I saw my GP several times with the drooping eyelids and was told there was nothing wrong with me. Eventually my sister took me to A&E and luckily one of the doctors there could see it was a muscular problem. They injected me with mestinon and my eye lids started to open again. After that I was started on mestinon and prednisolone and admitted to hospital for a week for tests which included some sort of electric shock tests to test the severity of the problem. I had several plasma exchange procedures over a number of months where my plasma was removed and replaced with other plasma. This procedure did help for a while but it was pretty expensive at that time. Eventually I underwent a thymectomy and I was one of the lucky ones who this helped. After a while I was able to reduce the meds to a point where I did not need any. Interestingly though there was not a tumour on my thymus. I was followed up by a neurologist for several years and the most recent blood tests (20 years ago) showed I still had a level of antibody but was not showing the symptoms they would have expected. Unfortunately I went on to suffer from RA another auto immune disease.   At my time of diagnosis it was rather rare 1 in 500,000 patients but I think it is better understood nowadays. Please feel free to ask any questions. I know it can badly affect your breathing. Are you aware you can get free prescriptions if you are on medication? It took me a while to be told that. I have seen another post on the forum from somebody whose mother has MG so hopefully you will get a few replies. 

littlechef

Hello Cressida
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

Sorry I forgot to mention have you had problems with memory loss I keep forgetting things what I've done it should be doing even to take my medication Mentinon tablets it's getting worse I don't know what to do .😭

Cressida

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@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. 

littlechef

@Cressida
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.