moving forward slowly

[stiff19]

so today had tests and told its most certainly myasthenia. still I have lots of questions as ptosis followed by awful systemic problems and myasthenia is varied and also a syndrome so at least moving forwards somewhat now but still much to see about 🙏

[VeeWat]

Which tests did they do? at least you will be able to have treatment if it is MG.

[stiff19 in reply to VeeWat]

I did the ice test and other eye testing and am to have more including a sleep test but feel I may need a myasthenia specialist to get to grips with things but for now glad to be being seen and symptoms acknowledged rather than the gaslighting. Yes I look forward to treatment I didnt get any today as last ophthalmologist suggested but I am to have bloods done and see specialist so hopefully it wont be long before some treatment.🙏

[VeeWat in reply to stiff19]

Hopefully, all four blood tests for MG including the odd one Lrp and the EMG.

[stiff19 in reply to VeeWat]

no but I dont think here locally at least they know much of myasthenia and will be having repeated bloods, musk and repeated emg but will see and maybe find a specialist in myasthenia if not .

[stiff19 in reply to VeeWat]

good shout though I will mention the lip too, I dont know why they didnt test all in the first place instead of one by one

[VeeWat]

emedicine.medscape.com/arti...

This mentions them all including LRP4

[stiff19]

thankyou 🙏

[AtopicGuy]

It seems weird to say 'congratulations', but being stuck with a misdiagnosis and no treatment is the worst fate of all. It would be great if you could update your profile with a brief summary of your journey. Reading through all your previous posts/threads is not really practical.

From what I've read, those with mild symptoms can sometimes be maintained with only pyridostigmine (which boosts levels of acetylcholine). Fingers crossed.

[stiff19]

I will when I know more and yes mis or undiagnosed is the worst. It's been over 6 years since the start of my journey and 5 years since myasthenia first suspected in whatever form and my symptoms are not mild but it is up and down rollercoaster. It was mild in beginning but progressed much and it really shouldn't have. Yes pyridostigmine have been mentioned as steroids only worked for mainly inflammation and skin (some).

Personally I believe the hydroxychloroquine I was given for other problems were to play with the myasthenia and the stopping them left me with big problems from whatever else it was the hydroxy were helping. My thyroid has been affected and with constant chest pain and hhr I also hope my thymus is checked and other antibodies for mg. Hopefully it will not take another 6 years to get to solid diagnosis and answers and take the worry out of it all regards the full picture. thankyou I will keep updated as I know more in hope it helps others.