Probable ALS

[Clamdigger]

Experiencing weakness in my hands, arms, and shoulders finally forced me to the doctor and after seeing 2 different neurologists and neurological surgeon they are thinking probable ALS.

Had an EMG (needle in the tongue is pleasant isn't it?) and it definitely showed issues in my arms and tongue, but my torso and legs are just fine. Guess I should consider myself lucky it hasn't hit there yet?

Surgeon said MRI shows some narrowing of the tubes, and a little arthritis, between 4 and 5 but not enough to cause the muscle wasting/weakness I'm experiencing.

I'm not having any real pain and very limited muscle twitching. Worst thing is cramps in my forearms when I move a hand the wrong way or a finger locking in place.

Starting on Ritulek on Friday.

Anyway, can't say I'm glad to be here, but thanks in advance for being here.

 

[lgelb]

Sorry to welcome you here, Clamdigger. Has the diagnosis been given by two different neurologists at different practices? Was one of them at a university? I would certainly seek an appointment at Hopkins or UMD if you haven't as yet.

We will support you however we can.

Best,
Laurie

 

[Clamdigger]

Yes, the surgeon and one of the doctors were at Hopkins, and the other doctor referred me to the doctors at Hopkins after his diagnosis. None of them would completely commit to ALS though, just that it moved from possible to probable. The JHU ALS Clinic is supposed to call me to set up an appointment this week.

I'm not sure what I need at this point, and I'm pretty sure I'm still kind of in shock about all of it. My mind keeps immediately going to worse case scenarios and I still have the hope that because it hasn't affected my torso, legs, or balance that maybe it's something else. Wishful thinking I'm sure.

Reading other peoples stories and experiences does help.

Thanks.

 

[soonerwife]

Welcome Clamdigger! Sorry to hear about your probable dx. You have found a great place for support.