Necrosis myositis

[Eddie1969]

hi, not written on here for a while, but just wonder if anyone has had tingling in there toes. And do they know why, it has come on on my big toe, i have had pins and needles in my legs in the past but not this. And it feels weird. Thanks for any help with this. X

[JeanBlackIsle]

I have this. I have assumed that it is linked to my reduced lung function because of the weakness in the muscles in my chest. It only happens occasionally and I have never remembered to tell the rheumatology consultant about it. I shall add it to the list for my next appointment.

[Eddie1969 in reply to JeanBlackIsle]

Thank you for your reply I will tell my consultant as well then. Take care .

[Campergirl76]

I have not had tinkling in my toes but first noticed a “sort of” warm sock feeling creeping simultaneously up lower legs in 2023. then 2 A&E visits for falls, then could not step up, get out of bed,arms got heavier, could not brush hair, pick up a jug on a table. Then more falls and 3 weeks hospitalization for observation and discharged with no diagnosis, treatment or prognosis and totally ignored by local health authority for 3 1/2 months so went privately to London.

In 4 months I have paid for numerous tests and now diagnosed with statin-induced necrositing myopathy.

All I have had from my local health authority has been 6 hydrotherapy 3 1/2 months after discharge, and later this month 5 daily ivigs 5 1/2 months after discharge.

As a result of my paying for 5 daily ivigs in 12/24 and steroids my ck levels have dropped from 7000 in 9/24 to 342 in 3/25.

Waiting to see how steroids and Azathioprine are affecting me. They say I will walk again. Been immobilised 6 months.

Still have cold feet and wear bed socks.

[Eddie1969 in reply to Campergirl76]

Thank you for your reply. I hope you continue to get better and get your mobility back. Just wondered if you had also have had any of the following. I have pain in the top of your hands, which feels weird and a very stiff low back. Which I am waiting for a scan for. My hands are really really dry and hurt, do you have any other symptoms like this as well. Just wondered as I feel ok but have these odd things going on with the tingling etc. take care and wish you all the best.

[Campergirl76 in reply to Eddie1969]

No: I am so fortunate not to have pain. Just weakness and fatigue.

Hope you condition improves.

[Eddie1969 in reply to Campergirl76]

Oh thank you for getting back to me. And you take care