Hi,
Y Neurologist recommended Botox for my Polyneuropathy, that was before I relized that the pain was more EM then PN. He said that it is injected into the top of the foot, I did not try it, as he kind of dumped me before I could try it.
Mads: I have had tightening of my calves and all muslce groups, and tendons from my head to my feet. The first relief I have found has been, what I believe to be the Anti malarial drug that I am taking for my SLE Lupus, the muscle tension started relaxing 7 months after starting the meds. I first noticed it after a nap, my shoulder muscles and calves were completely relaxed, this is after having continuos tension for almost 40 years! At first it kind of freaked me out, the difference was so shocking! If you think about it, as long as muscles are tense, they will pull on the tendons, making them very taught, if the muscle can relax, the tendons will naturally lengthen. The connection on the back of my ankles have tore off the bone, and huge Spurs have grown, so I probably cannot reverse thatā¦
My neurologist thinks the Polyneuropathy is secondary to the SLE Lupus. My Rheumy also thinks the EM is caused by a disturbance in the nervice system from Lupus, but havenāt had any tests to prove it.
What was this anti-malarial drug - I need it!!
ajh
Hope it keeps working for you please let us know if it continues
Good luck
Hey any updates on if that botox in your foot is still working how long did it last?
Hi
I would love to know how you are doing with the Botox
I am very interested thanks
I am also interested if the botox works! Canāt wait for an update!
I am not the OP, in fact this is my first post in this forum.
I have facial/ear EM (hand + feet flares are infrequent / manageable) mainly, burning every afternoon til wee hours of morning.
Iāve started having botox treatments earlier this year, full face + ears after failing many medications (or not tolerating side effects).
It has improved my āuntriggeredā night flares considerably I believe, but the progress is slow. At first I got injections every 2 weeks but not once every 3 months.
My ātriggeredā flares (like social anxiety, small temp changes) - not so much.
I get ~100 units per tx. Avg cost is 10$ / unit. I am very fortunate that this is an option for me.
I am not sure if it helps by blocking neurotransmitter release (preventing blood vessel dilation), or by relaxing muscles thereby promoting more even blood flow, or what.
Interestingly there is recent thought botox might help with depression (by limiting negative facial expressions).
Hope that helps someone.
*not once every 3 months => NOW once every 3 months