richard-maloon
Forum Replies Created
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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 at82 yrs. have to deplete IRA, No Roth IRA like now.) Been on </span>Riluzole <s”>since diagnosis plus L-Lysine 5-10 Grams! daily. </Do not miss in-person social interactions but enjoy exchanging ideas using Zoom sponsored by our New England ALS Association, particularly end-of-life options. I believe I will not want to be bedridden or fed through a tube. I walk and talk fine, but no strength in my hands. In palliative care now. Recommend joining local ALS Zoom meetings. need a positive attitude only.  R
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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 riluzole.
No cure, most persons die in less than two years, never reversed, ever.
HCPs Treating ALS Patients | Radicava® (edaravone) | FDA Approved (radicavahcp.com)
Write/talk to your local ALS clinic ASAP. Get your ALSÂ Score, called ALSFRS-R immediately. alsfrs-r score – Search (bing.com)
be prepared to be frustrated a lot.
best
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the only exercise I do is for my lungs, and I simply breathe in deeply expanding my stomach and exhale while puckering my lips 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 radicava simultaneously if things go as expected in a couple of weeks. why not do both? My health plan pays for riluzole. I move like a sloth, no pain can’t do ordinary tasks. slow progress to date. lots of l -serine. that is my story. research end-of-life alternatives.
r
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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 knob”. I bought an electric scooter. Most ALS patients have a respiratory failure within 3 to 5 years. My doctor does not expect a reversal of symptoms no matter what. The best I can expect is I decline less rapidly. Look for “Dagmar” on this forum. I believe she is a 10-year survivor.
If approved, I could start taking both drugs by mid-August. I am a patient only.
Richard
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if offered absolutely. i pick science over voodoo
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Do I have to search for a second opinion in this case, because I still got all the symptoms?
yes
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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 indications moving to the right. so far eating, walking briskly, and breathing okay that I attribute the breathing being okay to the recommended lung exercises. i have lots of gadgets!!!
11/11/2011
recommend an ALS clinic: In NH lebanon.
r
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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 10/21/2021Â http://www.biogen.com
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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. -
ALS Therapy Development Institute | ALS Therapy Development Institute
The above link may be worthwhile. Hard to sort out the “snake oil” from accepted treatment. I am doing a “snake oil” treatment using Melatonin.  J. Pineal Res. 2002; 33:186–187  ( also see updates)
Regarding TDP-43:
Maybe you can pretend you are a mouse and have them send you the compound. I didn’t like the term “administered” .
RM
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I have just been diagnosed with ALS (a few months ago) and think that articles like this that “help improve care” are pretty much useless. I am trying to make sense of the scientific articles on coconut oil and the use of Melatonin to slow symptoms. Also keeping track of the ALS Functional Rating Scale ( at 35). For what it’s worth.
R
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I have found this youtube video to be one of the best about ALS based on this person’s personal experience. It is 20 minutes long and even though it was uploaded maybe 10 years ago, I can attest that almost all of the tests he endured, and maybe I had a few more painless MRI tests are accurate. I also recommend you watch this video ONLY and do not see his future ones until later. I have not been clinically diagnosed with ALS but you don’t have to be a weatherman to know which way the wind is blowing. Based on my symptoms I think I am one year since the disease started. I have an appointment here in the Boston area on Feb. 12 with the Lahey clinic ALS center.
Yes, insist on tests.
If the link does not work Search youtube ALS Kevin Donnell.. Maybe sad…