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.🙏🤞🤞🤞
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stiff19
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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
Hi thankyou Cecily ,at least it was more positive than ive had since the neuro during covid who was the last interested one. I need to keep hoping this will be the one doc who I have been looking for to help 🤞she seemed sure it was myasthenia affecting face at least 👍 and I know there's treatment for that part so 🤞.will do and take care 🤗xx
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
Hi Stiff! This is so very heartening to read - and great that the ophthalmologist will see you and your daughter locally. Well done for preserving and hopefully your symptoms will be pieced together and you will get the diagnosis and treatment that you need. Do keep us posted, we are journeying with you! Thinking of you always 😘🤗😘
Thankyou HW, yes pleased for sure to get someone willing to look and again with the thought that myasthenia is the culprit .(again) Its the most hope and interest for years so ive got to grab it by the horns . Thinking of you too 😘🙏😘🤗
well here's hoping its moving forwards and no more steps backwards 🤞 I will try and find the link I found but bear with me I have trawled so much and kept so much I will have to sort through it all but yes it could be dormant and awakened I read and find this interesting as always had slight weakness before the eruption of it all 🤷♀️Please bear with me and I will try and find it . best wishes
Thankyou I have become hopeful but still wary of it all as low confidence in the health service nowadays and years of suffering with no care 🤷♀️ I find it doesn't matter how much we try to piece things together ,even if we are right with no interested or competent medical care its pointless. Optician said I see you have fibromyalgia ,I said do I? fatigue and brain fog and pains can be many things and when fibro was given before any other diagnosis when all else should be ruled out first then 🤷♀️Symptoms outside of fibro they say lead to ununifying diagnosis yet not all symptoms put together 🤷♀️ . well I dont believe now my progressive symptoms are fibromyalgia but will cross that bridge !!
Lets hope this is a step forward to more going forward and no more backward ones 🤞
I was supposed see opthalmologist old rheumatologist said referral done never had a appointment told her no contact nothing done.
Changed rheumatologist im seeing opthalmologist Thursday but via GP for type two diabetes.
Il tell her on hydroxychlorquine I'm only allowed half dose due to sight loss five lupus patients.
My friend has condition you just diagnosed with she's on azathioprine
I had eye test at home new bifocals being made
Keep updating it's good to talk about this I to lost faith local hospital but that was. Bad Dr x two at AE better care since then so I'm happy to go back
Thankyou yes it is good to talk .I feel for you I was told id have many tests which never happened just discharged to await referral somewhere else that never happened leaving me with awful problems. This they called a communication error🤷♀️and years on leaves me searching for the right help.
sorry you've been going through problems too I hope your upcoming appointment goes well and pleased you have found better care 🙏🙏 thankyou
🤗 yes can be tough we are all individual with different problems and lives and affected differently with health even when same diagnosis so yes is all we can do and try and deal with things one step at a time . Not too bad thankyou,we just roll with it and plod on at times dont we 💐🙏
Yes I had Dr appointment for my mental health though because I'm not coping well so I had medicine increased.I'm gonna do talking therapy when build works over.
That sounds good to me yes our mental health is just as important and very much overlooked at times when already dealing with health issues .I hope it helps 🙏 you take good care too 🤗
ThanksMy old rheumatology consultant used have form you fill before every appointment saying no health care with mental health every time but kings stopped that now under new consultant.
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IMPORTANT PLEASE, TAKE NOTE; I have been diagnosed with Hydroxychloroquine Macular Toxicity and loss of central visual field .
Adverse effects of hydroxy or bad flare?
Do i need a diet?
Rhumotolgy no more
Hydroxy
