Diagnosis Process Coping

[GabeS]

Hello,

Currently in the process of elimination/potential diagnosis. Hand weakness kicked all this off (noted clinically by local Neuro). Blood work normal, normal MRI. No EMG yet...asked to be referred to a center of excellence for EMG.

Referred to UCSF, but waiting....
Waiting sucks. I drink way too much lately to numb the mental gymnastics and fear of what is to come.


How did you handle this part? Is there any way to speed up the initial consult/EMG at places with expertise?

GS

 

[Nikki J]

You can ask to be on a cancel list. Be super nice to the scheduling person. Ask if you should check back at intervals. Also if it is true tell them you could get there with x hours notice. Same day cancels are unfortunately common in ALS clinics and covid is still around too.

otherwise if you are prepared for the appointment your best course is to keep busy and do some fun things. Worrying doesn’t help. Browsing the internet is frightening. If it is ALS you are never going to feel as good as you do now. If it is one of the many more likely things you will be glad you didn’t torture yourself unnecessarily

 

[Clearwater AL]

Gabe, please be careful with you saying you've been drinking too much lately.

Alcohol can amplify anxiety. Please try to keep it reasonable if you feel the
need to help cope in the "waiting limbo"... several/many have been in the
same situation here on this forum. Many of our PALS and CALS once went
through it too.

Hope you get an opening in a possible cancel list. Like Nikki said, call and
and let them know you'll take any that may come up.

 

[lgelb]

There's more than UCSF in your sea. If it's a long wait, I'd try all the major academic centers in the Bay Area that are in-network, like Sutter, Kaiser, Stanford. You can get on all those cancellation lists.

Some neuros are also more proactive than others in making a call/sending a message. If yours hasn't rattled any cages yet, s/he still can, with encouragement.

 

[Bestfriends14]

Hey Gabe,

I'm sorry for the wait; waiting is the worst part. What has your journey been to date? When you say hand weakness, what's been going on? Other than hand weakness, what was the clinical diagnosis to date?

 

[GabeS]

Good ideas. I'll ask for referrals to all the big centers...

I will continue to be lovely to the schedulers. Hadn't thought of telling them I can be anywhere in about an hour (pending traffic).

I am horrified by same-day cancellations, what a waste of precious resources.

As far as how I got here and what's on the table...
I noticed my hand wasn't working right eating and in the kitchen...wow, that's strange, I need 2 hands to push the knife through my kids apple/carrots when I'm cutting them... It's gotten worse. The failing tasks resonates with me...

And, the test where neuro pushes your fingers and thumbs around didn't go well on my left side. Especially the spread finger thing...

Neuro first suggested an RSI (I'm a heavy computer user due to job) or a neck issue...because yes, sometimes my neck hurts, and I carry kids around.

We have ruled out neck issues and the stuff blood looks for (infection, vitamins, autoimmune)

Differential dx is still RSI or nerve issues since no NCV/EMG yet and probably anything else that MRI and blood work don't catch. I am scared to read the exact language in my chart because I'm in denial this is happening to me, and I keep hoping I wake up better. Denial isn't in Egypt, it's currently in California. There is clearly a process/playbook that occurs before handing out a life-changing diagnosis (or not I still hope until someone looks at me and says ALS), and it's painful.

GS

 

[Bestfriends14]

Fingers crossed you get in somewhere fast. This may sound trite, but try to keep yourself as busy as possible; get outdoors, play with the kiddies etc. That will help the time until your neuro appointment go faster.

 

[GabeS]

EMG March 22. The one cancellation I was offered, there was no physical way I could make it. Boo. They told me it would take 2 hours. Looking forward to some answers. This process has been so very difficult.

G

 

[GabeS]

I got a cancellation for tomorrow.
If I am accompanied by an adult family member, will they let them in the room with me? Or, will they have to wait elsewhere?

G

 

[ShiftKicker]

The clinic would be the ones to ask that. I am sure different places have different rules.

 

[lgelb]

Likely you can bring a +1, but be prepared in case you can't.