- Joined
- May 9, 2016
- Messages
- 1,530
- Reason
- Lost a loved one
- Diagnosis
- 06/2016
- Country
- US
- State
- MN
- City
- Minneapolis
I think Clinic days must be a thing at the moment, Nuts and Sooner but had them too.
We had a generally unremarkable visit. The Doctor noted some slight progression in ankle weakness, not so much in the left hand which is hurting. He said that for the hand we actually need a hand specialist because he believes the pain there is arthritis and trigger finger type symptoms (Brian has had both). Given that the hand is slightly swollen, that seems reasonable to me. Pulmonary function is excellent.
An odd bit is that Brian's reflexes are toast. His leg AND arm reflexes are slow. Because of the slow reflexes and the slow progression at 6 months from diagnosis, the Dr. wants to do an another EMG in January (when his schedule allows). He said that after reviewing the first EMG again in addition to observing the slow reflexes and slow progression. He did say that slow reflexes in ALS are not at all common in ALS, most patients have hyper reflexes which I did know.
I know that when there are any symptoms not typical of ALS, and/or the patient does not meet classic diagnostic criteria that an EMG re-do post diagnosis is a fairly common event. I am not getting my hopes up at all.I am sure Brian is just a slightly A-typical ALS patient.
In spite of the dreary discussion on end of life choices, the one where my husband explained the plan again, and the rather startling mention of a DNR/DNI (Hey! We are not there yet!) option this visit did not make me want to jump off a cliff like last time. Seriously, I don't even know what it was but I was so upset after our last clinic I was kind of beside myself.
Off to an evening of TV and drinks. 6 hours at clinic took it out of both of us.
We had a generally unremarkable visit. The Doctor noted some slight progression in ankle weakness, not so much in the left hand which is hurting. He said that for the hand we actually need a hand specialist because he believes the pain there is arthritis and trigger finger type symptoms (Brian has had both). Given that the hand is slightly swollen, that seems reasonable to me. Pulmonary function is excellent.
An odd bit is that Brian's reflexes are toast. His leg AND arm reflexes are slow. Because of the slow reflexes and the slow progression at 6 months from diagnosis, the Dr. wants to do an another EMG in January (when his schedule allows). He said that after reviewing the first EMG again in addition to observing the slow reflexes and slow progression. He did say that slow reflexes in ALS are not at all common in ALS, most patients have hyper reflexes which I did know.
I know that when there are any symptoms not typical of ALS, and/or the patient does not meet classic diagnostic criteria that an EMG re-do post diagnosis is a fairly common event. I am not getting my hopes up at all.I am sure Brian is just a slightly A-typical ALS patient.
In spite of the dreary discussion on end of life choices, the one where my husband explained the plan again, and the rather startling mention of a DNR/DNI (Hey! We are not there yet!) option this visit did not make me want to jump off a cliff like last time. Seriously, I don't even know what it was but I was so upset after our last clinic I was kind of beside myself.
Off to an evening of TV and drinks. 6 hours at clinic took it out of both of us.
Juqigammz vjopht xomm dupvopai vu hu tnuuvjmz apvom zuas eqquopvnipv op vji pix zies.
