ALS Clinic Visit

[AfraidButNotAlone]

I went to my first multi-disciplinary clinic visit on Friday.

FVC - 88% down from 91% over the last 5 months.

Found out that I have bibrachial (both arms) symptoms and that, according to the doc, only about 10% of ALS patients present this way.

MDA is going to cover my clinic appointments from here on.

On the ALSFRS I am at 38 down from 42 over the last 5 months. They said that I am still above the normal progression (progressing slowly) though it feels quickly to me.

The PT doesn't think I need braces yet, but to get a cane.

That's all I can remember right now.

 

[mariam]

I notice that your tag is afraid and alone. I don't know you...however please know that I am here with you in spirit and I will be checking in on you and will have you in my thoughts and prayers. xoxoxoxo

 

[mrvaughan]

Hi afraid and alone! We are all here with you. The ALS clinic visits can be overwhelming. I remember them always telling my husband that his als was moving slower or different than others. His presented in both his arms first. He went on a ventilator at 8 years after diagnosis and is still alive now, 13.5 years after diagnosis. I know it is all scary, but from what I have seen, there is so much support at this forum. Look up the local ALS association and reach out to them. They have been very helpful to us. Also, when he first had ALS, the local support groups that met were very helpful and made you feel not alone. What a scary time for you. Know that there are many of us with you. !

 

[adozi]

I'm so glad you're home and have been to clinic! That is such good news that your FVC is so high.

 

[affected]

Thanks for the update, great you got to the clinic, and the progression isn't too fast so far.

How are you feeling being home now for a while?
How are your family doing, I bet that your wife is relieved to have you there with her! Spend all the time you can just having a ball, that's what holidays are all about after all :smile: