Status
Not open for further replies.

sya15

Active member
Joined
Jul 22, 2011
Messages
80
Reason
Friend was DX
Country
US
State
ct
City
middletown
Hi..
Just wanted give an update. Its been over 15months and so far my Bf symptoms have not progressed and no new onset of symptoms. Still just speech. He just had his 6mnth EMG (which is the 3rd one) still normal. I'm sooo confused can it still be ALS. Neuro said can't rule ALS out yet but whatever it is very slow progressing. Any thoughts from anyone?
 
If you are saying that a Neuro has said your boyfriend has been told he has ALS for over 15 months now and has had 3 EMG's spread out over that time period and they have all come back normal? I am not an expert but my opinion is get a 2nd opinion! Under the Criteris established to provide a 100% certain ALS an EMG has to be "dirty" in 3 different regions of the body. They break the body up into 4 regions 1) head 2) torso 3) arms 4) legs. For the head and torso 1 muscile in each of those regions is dfficent. In the arms and or legs 3 seperate muscles must be abnormal. The criteria for probable or possible ALS is less strict but definite ALS must follow that criteria. Of course that must be in conjction with numerous other tests ruling out other possibilities.

If you have not done so find an ALS clinic and an ALS specialist who may be able to provide you with better answers.
 
Ted,
thanks She is actually one of the best neuro. She specializes and runs ALS clinics. She has not said he has ALS just that we still can't rule it out. However from what I read bulbar onset is the fastest progression of ALS. Yet my BF has had no other symptoms. So I would have thought if bulbar ALS some other symptom by now.
 
I assume then that they have done an emg on his tongue? Has that come back normal or "dirty"?
 
seems to me he has umn bulbar onset that is why its a "wait and see" situation to see if he eventually develops lmn signs.
pls be it limb onset or rarer bulbar onset can take 3-5yrs to diagnose before completely ruling out als/lmn .
we had a pls/bulbar onset member who eventually showed lmn signs and her diagnosis was changed to als............judith i think it was.
maybe if you pm judith after the holidays she will be able to tell you more.

ps,if it is umn bulbar onset als then progression could be slower.
 
Exactly what I was thinking Olly. :)
 
Thanks for the info. I will pm Judith after the holidays. Ted yes they did his tongue and it was normal. Have a good christmas olly, alyoop and Ted ! Thanks again
 
Status
Not open for further replies.
Back
Top