Confused

[Hobbssy]

Just a little bit of history, my partner was diagnosed with ALS Oct/24. We had a meeting at the ALS clinic in January. The Dr from the clinic said I don’t think this is ALS. The Dr. from the clinic decided to try large doses of baclofen to try and improve hubbys walking by reducing the spasticity. We saw the ALS Dr 3 months later and says ALS isn’t off the table. He said to assess hubby and to look at his EMGs, it’s ALS, but he isn’t 100 % sure. So 3 months later, the ALS Dr says he thinks hubby has a type of ALS. He’s reluctant to call it ALS because only his legs are affected. He only has slight movement in his legs. Have you ever heard of this? Is it possible, this is the extent of this disease for him? It’s so hard to plan when we don’t know what we are dealing with. Thanks in advance for any comments or ideas what this is.

 

[lgelb]

If you could post the de-identified EMG, we could probably be more helpful. But if I understand correctly, the baclofen was not a success, his walking deteriorated, and he now has a bit of leg movement. However, in an earlier post you also mentioned issues with his left arm and eye? What has happened with those?

Do his legs look very thin, as well? If so, he could have the flail leg variant, a type of ALS that starts in both legs. But even if not, ALS does not 100% adhere to common onset patterns.

 

[Hobbssy]

I don’t have a copy of the EMG, but the Dr said there is no damage noted anywhere other than his legs. He still gets occasional spasms in his left arm and the eye droop is still present but hasn’t gotten any worse. Last summer I noticed his legs looked very thin, but they are so swollen now, it’s hard to tell. Thanks for your reply.

 

[Hobbssy]

I forgot to add that the Dr stated it was upper motor neurons that are affected

 

[lgelb]

Does he have a chair where he can elevate his legs, if they are swollen? In a power wheelchair the footrests can be adjusted differently when he rolls than when he's parked, and of course in a recliner or hospital bed, there is elevation.

Gentle therapeutic massage moving the fluid away from where it's collected, toward the center of the body, is also often used. A PT can show you how to do it in the way that works best for him, to avoid tissue irritation.