Reply To: Prickly/water droplet sensations

June 4, 2012 at 1:50 am

heather- I hear ya.. I have a 1 year old and a 2 year old and have been sick since my son was 6 weeks old (he is my 14 month old).. The first dr I went to (on a friday afternoon) said.. I am concerned it might be ALS.. ok have a great weekend- see ya Monday for your EMG!?!!!! I was a SERIOUS WRECK!!!! I knew what ALS was and had secretly feared that.. but to hear a dr tell me that alone in a room.. it was so sureal I can’t even express! Anyhow that EMG was clean, well the needle part.. I had demylenation on my most symptomatic area (my knee at the time) hands had already been hit too… all my NCV were slow, but they aren’t sure if it was due to my extremities being cold or not..
I had three EMG’s by three different doctors within four months.. the last one at the ALS clinic in the university here… I was sure this was when they were gonna tell me it is ALS/MND.. at this point I had slurred speech and swallowing issues, knee/leg, hip, hand shoulder face weakness and visable hand/muscle atrophy and tongue atrophy…. NO ALS.. needle emg totally normal! My reflexes have been diminshed or absent in my upper extremities all along, and most affected knee is less than my less affected side.. however they are still brisk on both knees most of the time (it is such a subjective test.. i hate it-each neuro tells you your reflexes are different i swear!)

I have had fasiculations for about 4 years now.. just in my legs for the first two (and I had a numb right foot, i alwyas thought – my shoes were too tight, or when I would jog it would get worse up my leg- figured I had a pinched nerve in my back.. never thought much more of it).. now i have fasiculations EVERYWHERE.. though they are less with IVIG now.. tingling- heat makes this WAY worse.. i was in the sun today and i feel like i have prickly pear all over me.. pretty bad shocks all over (IVIG has helped this except when I have relapses).
It hit both hands of mine at the same time and I literally couldn’t text, scoop formula (had to give up breastfeeding at 7 months when I came home and pumped out water – I had serious GI symptoms before the neuro symptoms), hold silverwear or do my job which requires very good dexterity.. I can do all of those things now THANK GOD afer my second round of IVIG…
feel like I have been given a second chance at life.. though I still fear ALS very much.. i have ptsd from that dr appointment!! (sorry I ramble)
have you had an emg yet?