New here

[Tall John]

Question to all, particularly Powder Pig.

Here's my deal : I'm male, 45. Been a very scary year, still NOT officially diagnosed and may have to move to ALS site, but here goes (many here have same stuff).

Started twitching in May 2005, upper arms and chest, then noticed a slight loss of strength in my left hand (while working out) end of November 2005. By end December, I thought I had a pinched nerve or such, because the hand would not open and shut as rapidly as my other.

First neuro did all the tests (blood, MRI of spine and head, and EMG). She was stumped, no conduction block, no anti - GM1 titers, hyper reflexic. She wanted to send me to physical therapy for ten weeks and then re-evaluate. I was ok with this but did not think it would work. By now (of course) the ALS discussion had come up, so I asked for a referral to UCSF. She was hesitant (said she only thought there was a less than 20% chance that it would be - said I was too young and looked to good - then I looked up Lou Gehrig and realized that I already was older than he when he passed away).My thought was to eliminate the scariest thing and then work backwards.

Dr. Loemen-Hoerth and the ALS clinic are great, (saw her 2/15/06) they treat you like a human. Anyway, she looked at everything and thought chances were 50-50 between ALS and MMN. Then battle started with insurance company to pay for Ivig, finally got series of 3 approved in Sept. In between had seen another Neuro (first one had stated that it could NOT be MMN, because she knew that did not present with fasciculations !!!! Wow !) Second one looked at UCSF study, asked me to stick out my tongue and declared that I had ALS and UCSF was wrong. Again Wow ! From what I can gather fasciculations in the tongue are LM not UM.

Anyway, I think Ivig does not work for me (dramatically anyway). My symptoms continue to be focussed in the left hand and forearm, some progression. Going back to UCSF in early Jan.

I also have a stange tingling on left side of my face, particularly when I get tired. I also get tired (like everyone here), but I have moments where I feel so lousy and creepy, I feel like I'm going to die. This happens 2-3 times a week.

Questions are these : For some of you (particularly those who present like me, no block, no anti - GM1 etc) nothing seemed to work. What can I expect from here ? Do the creepy episodes happen to anyone ? How about the tingling in the face ? Thanks