following ophthalmology

[stiff19]

(Hi MEGS)

For those of you who know my journey ive had a real struggle, and still am but have had some help with a steroid trial but no healthcare. Finally I got to see ophthalmologist last week who again thinks I have myasthenia or myasthenia syndrome with other autoimmune possibly mctd.(on first impression). She was miffed why I hadn't been seen by ophthalmology before and it being 6 years (not from lack of trying to get referred) and said she will arrange to see me locally as I was sent to her an hour away from local hospital in a very small basic hospital which she said has nothing there but will see me ,redo some tests and hopefully do the ice test which I have requested gp and hospital do but no one would for years. On telling her what the ice test does for me she said did you know that is diagnostic for mg I said yes.My daughter who also has different eye issue though many similar symptoms was with me and I mentioned that I was concerned for her and symptoms incase there was a link and she kindly looked at my daughters eye and little data she could on computer and has said she will see us both and my daughter is to attend with me when she sends appointment. I could have cried with relief but as trust issues have led me with nhs, I am hopeful but wary and hope the interest lasts and that the mess of recent years (complaint still running) doesn't mess it all up as so disjointed and huge gap in history of years yet progressive symptoms and not being seen. MG in whichever form is fitting and its been suspected 3 times without further or different testing so hope to get the correct help and tests and diagnosis so I can find the help ive been looking for for years. She explained the steroids may have helped other symptoms from undiagnosed other problems but that they are not the correct treatment for mg answering why the suffering continues. so onwards we go and hopefully this will be the beginning of answers for my sake and my daughters. I do fear going back to local hospital but hope she will be different.🤞🤞🤞

From my own research statins and hydroxy can be involved in mg. I was years back given hydroxy for palindromic rheumatism, when stopped is when hell broke loose and symptoms mounted and progressed and eye droop bought breathing and muscles problems. I was told to stop taking statins incase worsened muscle problems. Hydroxy can apparently awaken latent mg and I wonder if this is what happened and the way was helping with hands etc (not palindromic) was it working on other symptoms 🤷‍♀️ It all fits and even signs ive had that looked like lupus, dermamyositis, sarcoidosis, scleroderma ....maybe thats the mctd but always told bloods ok but have never seen the results 🤷‍♀️.Maybe stopping statins gave rise to my high and low heart rate? The muscle problems continued without them.

So much needs answering the lack of care has been tremendous and I just feel its time I got a break and some help so im hoping very much to get the help though I could have done with it long ago and still fearful given the crumbling nhs.🙏🤞🤞🤞

[CecilyParsley]

Hi lovely, you have suffered so much from poor and indifferent care that I am desperate for you to have some expert and considerate care. I hope that this new approach will lead to answers you need and less pain and respite from the endless symptoms. Please keep us updated xxx

[lupime]

I do so hope that this time you will get some proper investigation and treatment. We will be waiting to hear how you have gone on. All the best to you.you.x