Propofol reverses symptoms

[sadiemae]

Nighthawk, just curious, is anyone still doing OSC? I haven't been following it for quite a while. My husband did it for only 4 days, then got paranoid that I was trying to kill him. He noticed that his fasticulations came back with a vengeance, and it also destroyed his taste buds. Guess I need to find the forum agaun and check up in the guys. Especially Ron. What a hoot he is!

 

[pearshoot]

being improvement wears off in short period i see no difference in this than ck-357. you feel better and stronger for short period but no reversal. i don't know if muscle strength would have continued if i had been allowed to stay on ck-357. maybe phase II b will answer tahat question

 

[Nighthawk]

@Sadiemae:

Sorry for the late response.
Lately, I am not logging in onto the forum with the same frequency I used to.
Too many "twitchers" (DIHALS) lately stealing focus and time from us, time that could be used for helping new PALS in need for help and advice or existing PALS.

Regarding your question, I am a participant member at ALS---TDI Forum and, as far as I know, no one there is doing the OSC.
They said that the benefits of OSC only last about 6 months and your progression resumes where it left off afterwards.

Now, they are trying the Propofol. There is a long thread running there (24 pages of posts and information).

Ron S. is disappointed with the ALS---TDI Forum as of late and he hasn't been logging in as often as he used to.
Now, those Forum Admins changed the rules there and you can no longer read threads as a "Guest". You now have to either log in (assuming you have an account there) or create an account. Too sad, that Forum is going downhill in my opinion.

By the way, how have you been, Sadiemae?


NH

 

[Txgirl]

Nighthawk:

I am newly diagnosed and new to this forum. I have been following the threads re: Propofol. Are they doing a clinical trial? I looked at the current clinical trials but did not see propofol trial. I am very interested in participating in this trial if/when it is available.

 

[Nighthawk]

Nighthawk:

I am newly diagnosed and new to this forum. I have been following the threads re: Propofol. Are they doing a clinical trial? I looked at the current clinical trials but did not see propofol trial. I am very interested in participating in this trial if/when it is available.

No, there is NOT ANY official Propofol trial.

An ALS---TDI Forum member named Louis came up with the idea of that Propofol could be used to reverse the ALS symptoms based on results he observed on his wife when she underwent a surgery (Non-ALS related) and the anesthetic used at that time was Propofol.
He noticed some improvements on her that made he think that Propofol was responsible for those improvements (which, by the way, were short lived, they wore off in matter of just weeks).

He started a thread there(24 pages, so far) suggesting to the ALS---TDI Research division to test Propofol on PALS but, because of the legal issues involving the death of the singer M.J. back in 2009 apparently due to Propofol, ALS---TDI completely refused to test Propofol even on mice. (!)

However, some PALS at that Forum, who also underwent surgical procedures (non-ALS related) involving Propofol as the used anesthetic also claimed that their ALS symptoms improved upon the use of Propofol for their surgeries.

Because of the ALS---TDI refusal to test Propofol as a treatment for ALS, Louis is collecting anecdotal evidence from PALS sedated with Propofol to accumulate enough evidence to motivate an organization such as ALS---Untangled to conduct tests of Propofol to see if Louis' claims of that this anesthetic would help with ALS holds true.


I hope to have clarified any doubts you may have.

Regards,

NH

 

[sadiemae]

@ Nighthawk. To say Ron is disappointed us putting it mildly, I am sure. Could you send me the link to the propifol thread in a PM? Doing OK here I guess. Trying to figure out how to get Congress to revise the Services Connection law that means my husband can not be Service Connected. He was Army Nat Guard, and for 6 yrs worked full time for the Az Army National Guard in a " civilian" status. His 90 days Active Duty were considered as Training, and the way the law is now, he is not a service connected Veteran. My daughter graduates this month, and we will be losing her SSDI, which us a third of our income. I am going to go back to work, so we can pay our rent, but Les is unable to walk or even move by himself, so it Is going to be a terrifying time for him. His dog and him alone at home may not even be possible, but we have no choices.

 

[caldona]

you might get hospice to stay with him but make sure you have equipment you need first or you will have to stop using them and resign with them

 

[Nighthawk]

@Dear Sadiemae:

I've sent you a PM with a link to the Propofol thread that is being discussed at ALS--- TDI Forums. Just be mindful that they are requiring registration and Log in onto the Forum to be able to read threads and posts. You can no longer browse the Forum contents anonymously as a "Guest".

If you need anything else just let me know and I'll do my best to help.

NH

 

[Txgirl]

Nighthawk: Thank you for all of the info. and clarification. I have registered on the ALS---TDI forums.

 

[Barbie]

@sadiemae- I think that you will not lose your daughter's SSDI because that is a percentage of your husband's. it will "convert" back to him. I know that every time one of my kids crosses the 18 yo threshold the remaining kids' check went up. when my last one goes next year, I am sure I was told that dad would get it all. I am no expert--so check with the SS.

As far as the propofol being a deadly drug--so what? ALS is a deadly disease and MJ used it a long time before he died. What stinks is that someone rich and famous like MJ can get a hold of and abuse drugs easily, and honest people who are trying to save their own lives can't. It doesn't make any sense that they would not even test it on mice--can't any drug be deadly if abused enough?

 

[Annie's Phil]

Has anybody proposed a hypothesis regarding the mechanism that propofol reverses ALS symptoms?

 

[Nighthawk]

Has anybody proposed a hypothesis regarding the mechanism that propofol reverses ALS symptoms?

@Annie's Phill:

There is a Scientific paper (out of many more out there) that explains the mechanism of action of Propofol when dealing with Neurological problems (ALS is a Neurological problem, by the way).
Many more papers like this one can be read at the thread titled: "Is Propofol the cure for ALS?" which is still ongoing at ALS---TDI Forums (you may need to register an account there in order to access this one and other threads because they recently changed the rules there and no longer allow anonymous reading as a "Guest").


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The experimental and clinical pharmacology of propofol, an anesthetic agent with neuroprotective properties.
Kotani Y, Shimazawa M, Yoshimura S, Iwama T, Hara H.

Department of Biofunctional Evaluation, Molecular Pharmacology, Gifu Pharmaceutical University, Gifu 502-8585, Japan.

Abstract

Propofol (2,6-diisopropylphenol) is a versatile, short-acting, intravenous (i.v.) sedative-hypnotic agent initially marketed as an anesthetic, and now also widely used for the sedation of patients in the intensive care unit (ICU). At the room temperature propofol is an oil and is insoluble in water. It has a remarkable safety profile. Its most common side effects are dose-dependent hypotension and cardiorespiratory depression. Propofol is a global central nervous system (CNS) depressant. It activates gamma-aminobutyric acid (GABA A) receptors directly, inhibits the N-methyl-d-aspartate (NMDA) receptor and modulates calcium influx through slow calcium-ion channels. Furthermore, at doses that do not produce sedation, propofol has an anxiolytic effect. It has also immunomodulatory activity, and may, therefore, diminish the systemic inflammatory response believed to be responsible for organ dysfunction. Propofol has been reported to have neuroprotective effects. It reduces cerebral blood flow and intracranial pressure (ICP), is a potent antioxidant, and has anti-inflammatory properties. Laboratory investigations revealed that it might also protect brain from ischemic injury. Propofol formulations contain either disodium edetate (EDTA) or sodium metabisulfite, which have antibacterial and antifungal properties. EDTA is also a chelator of divalent ions such as calcium, magnesium, and zinc. Recently, EDTA has been reported to exert a neuroprotective effect itself by chelating surplus intracerebral zinc in an ischemia model. This article reviews the neuroprotective effects of propofol and its mechanism of action.

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I hope this helps.



NH

 

[Nighthawk]

@Annie's Phil,


I posted a reply to your question.
It went to "Moderation". It should show up later once it's approved.

Regards,


NH

 

[Annie's Phil]

Thanks NH. I couldn't understand how motor function that has been destroyed because of motor neuron death could be restored without the affected motor neurons being renewed. Since the symptom reversal is apparently short-lived, it didn't seem likely that the motor neurons had been regenerated, or their function replaced by others. Protecting undamaged motor neurons would protect against progression, but I'll have to read the references you gave to see how actual reversal of symptoms is hypothesized. So I just found the apparent reversal benefit curious.

Thanks again.

 

[Nighthawk]

@Annie's Phil:

There should be more abstracts and scientific papers that explain a lot better how Propofol works and what is its mechanism of action but, the majority of them are on the Propofol thread I mentioned to you about at the ALS---TDI Forum. You may need to create an account there to access them because as of this May 27, they no longer allow to browse threads annonimously as a "Guest".
Actually it's a hot thread back there. It was started by the en of this April and it's still ongoing (25 pages worth of posts, scientific papers and abstracts plus the testimonial of several PALS who underwent surgical procedures that range from colonoscopy to tooth extraction and Propofol was the anesthetic used on them).

I agree with you on that the perceived "improvements" may be short-lived but people (PALS) are trying desperately to stay afloat and will hold on onto something whatever it is, that they think could give them a little more time until a definite cure is finally found.


NH