ALS Fear

[melfish]

I find it strange that you've set this arbitrary time frame for your anxiety, when you have been given the greatest peace of mind possible: a clean clinical and a clean EMG. I'd kill for that.

[mihu]

I also had the CPK blood test and it's withing the normal range.

40 - 196 , and my value it's 88 ( that means I have no biomarkers for muscle wasting ).

I have 2 months and about ~ 1 week now. However, I have days when I have super spasms, and this reminds me of my DAD and how it started...

However, my mom told me. In his case it was different, when he started to twitch and got to the doctor, the neuro already noted "** Suspicion".

In my case is different but I read a lot of reports about people who had clean EMG's and in 6-8 months it started to show up with other symptoms.

I hope this is not my case. I know I have to stay out of the internet. Monday I'll begin Zoloft treatment and stop drinking for a while. I hope this will help...

[mihu]

No since 2 days I started to feel my left hand a bit weaker than right. I am not sure if it's the classic "failure" in ALS. Not sure if it's just perceived.

Today at the gym I tried to do curls and with the left hand I can do 17 @ 30 lbs and with the right hand I can do 20. Problem is that left arm gets fatigued, and I had tremors after.

My face in the right side seems atrophied. I started on SSRI but It takes 3 weeks to install in..

However, I know I cannot have fear for the things I cannot control. But at this point I would love to know If I have ALS so I can do a life insurance prior to diagnosis for my baby, sell the house and do whatever I can do for the time as I still can, and then opt in for assisted suicide once the doctors will recommend going on a vent.

I hate this condition, whatever is...

[Becazican]

You have everything all planned out except what if your wrong. Which i think you are? You are wasting precious time , if you were having muscle wasting your ce would either be high normal or high, it wasn’t. You have a clean emg . This is all just to remind you that you are healthy.

[mihu]

Mey god hear you !!

[tryingtosurvive1]

If you have genetic ALS it wouldn't just be your dad. You'd have something like a grandparent or an aunt or a cousin, etc, etc. Multiple people. These are "autosomal dominant" conditions. I have a milder one and it's me, my sister, my mom, my late grandfather, probably my mom's cousin, etc. Educate yourself about genetics and that will reassure you if you still need it.

I'm sorry your dad died. I hope you can grieve him and move past this fear.

---------- Post added at 16:05 ---------- Previous post was at 16:03 ----------

melfish, I think ready access to NCVs/EMGs is not an unalloyed good for twitchers. Occasionally people will fixate on some mild abnormality the test picks up and that extends their obsession.

[melfish]

I agree. I don't think doctors should be handing out EMGs like candy

[atl]

I agree. I don't think doctors should be handing out EMGs like candy

No, definitely not, some of us would be in there on a weekly basis.

[melfish]

It's not just that. It's that EMG aren't just for ALS diagnosis. They will likely find something wrong, and HAers won't be able to let it go. Then what?

[atl]

Something for those of us who have been dealing with this for months: it’s highlight unlikely the the disease wouldn’t have progressed over those months (I’m at 3) in a way that is quite noticeable. You’d know it by now.

Of course reasoning with this thing doesn’t really ever work.