ice test

[stiff19]

hi has anyone had negative bloods but positive ice test for myasthenia

[tallyho]

yes this is only to positively determine Ocular Myasthenia though I was and also positive on the fatigue ability test.

[stiff19 in reply to tallyho]

thankyou can I ask if you were positive on nerve tests or bloods. I am 6 years into ptosis and ice opens my eye. I get muscle weakness come and go and breathing problems but also systemic problems which may lead to difficult diagnosis plus family md. I have read that ice test is specific . local healthcare is not good ,did you see ophthalmology or neurology. sorry for so many questions but im trying to get to bottom of this and find some answers

[tallyho in reply to stiff19]

Hi there I saw ocuplasty and neurologist. I see an ophthalmologist every month any way as I have eye injections for DMO which is a different condition altogether. I see 4 different consultants for 4 different eye conditions

[stiff19 in reply to tallyho]

please can you tell me of the fatigue ability test and what's involved as not been offered this

[tallyho in reply to stiff19]

It’s where they measure how open you eye is then you look up and down a few times and then they measure again. My eye lid completely closes

[stiff19 in reply to tallyho]

mine does too thankyou or did just now as tried this. Im told I sleep with eyes open too do you do this?

[stiff19]

sorry to hear that but yes thankyou I think I need to try to see an ophthalmologist not just optician but getting a referral is another problem . best wishes and thankyou for replying

[Dinolulu in reply to stiff19]

A Neuro ophthalmologist would be best. It’s how my husband was diagnosed. There aren’t very many if them. Might certainly be worth a visit to Mayo Clinic or other large medical center. Go to the best!!

[stiff19]

Thankyou yes my daughter has been waiting for over a year for neuro ophthalmologist on referral from opticians but they kept sending her to ophthalmologist and I had to stamp my feet and say no she was referred to a neuro ophthalmologist so thats who I want her to see as its not purely with her ophthalmology with attacks leaving her with loss of colour in one eye. Maybe our differing problems share a link I dont know but getting back to question yes thankyiu I think you are right so I will have to try and find a way 🙏

[Green_Sadie]

I do

[stiff19 in reply to Green_Sadie]

please explain I do im interested