Reply To: Muscle Fascirculation increase

Hello! I also greatly feared, and still do fear ALS as well.. I have had twitching in my legs after exercise x almost 4 years now.. Never thought much of it since I didn’t have weakness.. and then I had a medical procedure go very wrong landed in the hospital with blood transfusions and BAM.. hello weakness!! everything was weak on me.. legs, especially hips, hands (couldnt’ hold on to anything, my phone, silverwear kids etc) then I started having breathing, swallowing and speech problems.. my facial muscles are weak etc.. first dr I saw said he thought I may have ALS (i was 30 years old when he told me this).. now over a year later and IVIG working and many neuros and emgs later my diagnosis is CIDP
though I am atypical – reflexes in upper extremities are dulled down, but legs/knees are brisk as they have been all my life.. Needle emg was normal for me all three times, and NCV showed one area of demylenation.. anyhow after my medical procedure went wrong and all the weakness started every single muscle in my body twtiched.. the 2nd IVIG took this all away and I felt almost back to normal… however since then sometimes IVIG works great, other times I swear they just gave me saline! As far as the fasics go.. I have them everyday.. though not nearly as much as I used to.. they are there.. From what I have read with CIDP and people I have met at the infusion center – IVIG effectivity not lasting for years seems to be common- then sometimes they add immunosuppresants or do more loading doses (I am still trying to learn about it all) or try other things as Lori mentioned
I too fear that maybe this is still MND.. maybe it’s all in my head that IVIG is helping.. but then I realize I just have PTSD from my first dr appointment 🙂 I AM better for sure.. can do thinks I coudln’t even begin to do a year ago, and ALS/MND does not respond to IVIG…. and then I can tallk myself down from the ledge.. temporarily until I freak myself out again!!
my diagnosis was sealed when they did the skin/epidermal nerve biopsies.. they were quite abnormal all the way up to the thigh.. It’s a low risk simple procedure if they offer it where you are!
Good luck, and So sorry you have to go through the physical and especially mental stress of this all!!