pALS?  = patients with ALS? I am an ALS patient for almost 3 years. I tried to add Radicava ORS but was rejected due to income. (<span style=”color: #333333;”>at 82 yrs. have to deplete IRA, No Roth IRA like now.)  Been on </span>Riluzole <span style=”color: #333333;”>since diagnosis plus L-Lysine 5-10 Grams! daily. </span>

Do not miss… Read more

I was diagnosed almost 3 years ago by a newly minted neurologist and had several MRI tests. you need to advocate for yourself. I am on Medicare, and they paid for all tests. I also went to Leahy’s clinic in Boston and verified the diagnosis. There are only two drugs ” approved” for ALS: Radicava 0ral ($$$$$$) and  Riluzole. I take… Read more

the only exercise I do is for my lungs, and I simply breathe in deeply that expand my stomach, and exhale while puckering my lips so as to make it “hard” to expel the air. 25 times 4-8 times per day. You can buy a device where you can measure the pressure, but this has worked okay for a couple of years.  I will try riluzole and… Read more

I was diagnosed with ALS about 2 years ago and immediately put on riluzole.  A week ago my ALS doctor and I decided to add Radicava ORS.   My present ALSFR is 43. I do breathing exercises that help. I have lost control in my left hand and about 50 plus loss in my right. I still drive but have a hard time getting in my truck. I use a “suicide… Read more

if offered absolutely. i pick science over voodoo

 

Do I have to search for a second opinion in this case, because I still got all the symptoms?

 

yes

Since I am older than some ( 81) and two years ( in hindsight)living with ALS with an unambiguous diagnosis in January 2021, I have seen no effects on sleep.  I am on the drug riluzole and vitamins l-syrene and melatonin.  The L-styrene trials are ongoing but nothing encouraging after years of study.

Symptoms began in the left arm, with some… Read more

Tofersen is an antisense asset being evaluated for the potential treatment of ALS. In the Phase 3 VALOR study, the primary endpoint as measured by the Revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) did not reach statistical significance…

accessed 10/21/2021  http://www.biogen.com

 

Hi Everyone. Diagnosed jan 2021, probable symptoms started 6/2020. Progression: slow in the sense I can compensate for most everything except the loss of my left arm. Beginning to have symptoms in the right arm. I wanted to list my medicine and snake oils that’s all:
Melatonin
Charcoal
Prevagen
L-Serine AND
Riluzole.