Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 07-11-2018, 09:40 AM #1
rosepointe rosepointe is offline
Junior Member
 
Join Date: Jul 2018
Posts: 12
5 yr Member
rosepointe rosepointe is offline
Junior Member
 
Join Date: Jul 2018
Posts: 12
5 yr Member
Default New To This Board. Diagnoised MG last year.

Hi All,
I am new to this board and felt I needed to find a place for some support without reading too much that makes me go nuts. I was diagnosed in March of 2017 after having diplopia. At first they did not think that I had MG but when my eye started to close it was confirmed. I blood work also tested positive which I know is not always the case with others.
I am very suggestable and panic when I read things so I tend to be cautious with what I read and take bits in at a time. I feel I have excellent Dr's who are very familiar with and treat Myasthenia patients.
I responded well to Mestinon initially but started having speech symptoms in January of 2018. As with any autoimmune problem I know there will be good days and bad. And the more upset and fearful I get the more my symptoms increase. No surprise there! I also work out several times a week.
I keep active and we travel for long periods of time with "just in case" medication but I am finding after 18 months I might need some support options. I am a psychotherapist (pretty much retired now) and have spent my life helping others cope. My major problem is being able to manage the changes that happen without fearing the worst.
I just found this thread yesterday and felt that it might be a good idea to find a balance of support without feeling my life is ending. As with any illness (and this is late onset for me) one has a loss. I think I am now beginning to feel the loss when I was just adjusting to the changes before.
Thanks for listening.
Sue
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"Thanks for this!" says:
AnnieB3 (07-11-2018)
 

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