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Old 05-15-2013, 06:50 PM   #1 (permalink)
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Default Propofol reverses symptoms

I underwent laser septoplasty yesterday and requested propofol as the anesthetic. Based on my research I expected improvement in my als symptoms. I was not disappointed.
Every symptom improved. I have bulbar onset als. Symptom onset 13 months ago. What was affected most recently showed the greatest improvement. My left leg had been starting to buckle for three days. It is perfect now. Gait had become somewhat spastic, smooth now. Dexterity better all areas. My mouth opens twice as wide. I can smile again. Some words are now quite clear but there are some consonants I still cannot form. My tongue moves much better too. Speech and swallowing are hard to gauge since my nostrils are completely clogged and bleeding.
The effects are going to be temporary, perhaps two weeks. But, there is no reason that this should not be a front line treatment for pals. Follow the propofol thread on als.net for my story(cypress) and there are many abstracts and journal articles sited.
Now onto another drug known as Dihexa. It is a small molecule that passes the bbb and grows new synapses. They would be worth growing with the propofol saving them.

Pals and Cals, propofol is earth shattering for us! Get busy looking into this NOW!

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Old 05-15-2013, 10:54 PM   #2 (permalink)
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Default Re: Propofol reverses symptoms

I've been following this thread closely at: "ALS---TDI" Forums since forum member
"ichisan" started it back there.

My thoughts, however are in tandem with yours and the improvements seen might be short lived. I still am skeptical how long term these improvements will wear off.
I think most patients will require weekly or bi-weekly injections depending on the patient's condition. So, this will translate in continuous visits to the Clinic for maintenance treatments.

Just my 2 cents.


NH
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Old 05-17-2013, 12:35 AM   #3 (permalink)
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Default Re: Propofol reverses symptoms

Quote:
Originally Posted by Nighthawk View Post
I've been following this thread closely at: "ALS---TDI" Forums since forum member
"ichisan" started it back there.

My thoughts, however are in tandem with yours and the improvements seen might be short lived. I still am skeptical how long term these improvements will wear off.
I think most patients will require weekly or bi-weekly injections depending on the patient's condition. So, this will translate in continuous visits to the Clinic for maintenance treatments.

Just my 2 cents.


NH
That is much better than the alternative..........
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Old 05-17-2013, 09:29 AM   #4 (permalink)
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Default Re: Propofol reverses symptoms

It is the only treatment that is readily available that actually reverses symptoms. Not slows, REVERSES!
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Old 05-17-2013, 01:45 PM   #5 (permalink)
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Default Re: Propofol reverses symptoms

14 years ago it was found out that propofol completely stopped fibrillations in an ALS patient:

Propofol suppressed electromyographic fibrillation potentials in a patient with amyotrophic lateral sclerosis - Springer

Wonder if anyone outside the field of anestesiology has found that discovery worth further studies so far..
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Old 05-17-2013, 02:08 PM   #6 (permalink)
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Default Re: Propofol reverses symptoms

The way I see it right now is: after the problems Dr. Murray had with the dead of the singer M.J. back in 2009, Propofol has become more regulated and under heavy scrutiny by the authorities. So what Neurologist on this world would dare use this molecule on an ALS patient just for experimentation's sake?

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Old 05-17-2013, 02:39 PM   #7 (permalink)
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Default Re: Propofol reverses symptoms

Maybe not a neurologist for experimentation's sake, but a dentist might find it justifiable if given a proper reason. And while at it, why not take records of everything you can..
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Old 05-17-2013, 04:04 PM   #8 (permalink)
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Default Re: Propofol reverses symptoms

Not wanting to burst your bubble, guys but, Propofol positive effects on PALS are more likely to be temporary, just like OSC was, which means new doses/injections will be needed once the effects start to wear off.

You are not going to see your...let's say dentist on monthly basis to get a tooth pulled every time so you can get exposed to a new dose of Propofol to keep the effects of the drug from wearing off.

Furthermore, only well trained people (nurses, surgeons) could run this procedure as Propofol affects breathing which is severely compromised on people with ALS.

Lastly, what about side effects resulting on prolonged/chronic use of this drug?

And, what about drug tolerance?

Drug tolerance which occurs when a personís reaction to a drug decreases so they need larger and larger doses to have the same effect.
For example, if a person uses painkillers over an extended period of time, then they will need to consume larger and larger quantities in order to get the same results. Drug tolerance, in other words, is desensitization to a drug which might happen with Propofol.

What would happen once people (PALS, in this case) develop drug tolerance to it?
Get larger doses?

So many factors involved here before jumping the gun.


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Old 05-17-2013, 05:17 PM   #9 (permalink)
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Default Re: Propofol reverses symptoms

I will get more propofol any way I have to when needed. Already on death row.
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Old 05-17-2013, 05:21 PM   #10 (permalink)
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Default Re: Propofol reverses symptoms

Well said Nighthawk. This is a very dangerous drug and deadly in the wrong hands. It takes constant cardiac monitoring and respiratory monitoring to assure safety. Might work as a final exit!
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Old 05-26-2013, 01:40 PM   #11 (permalink)
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Default Re: Propofol reverses symptoms

Als is deadly period. If you want to ignore the only thing that reverses symptoms you have surrendered. Get behind propofol people, the benefit far outweighs the alternative. Who cares that pals discovered it. It works. Take control of your future while you have one.
Most of the gains I got from one treatment are gone, but that's two weeks of bliss, with hope of more to come. Some of us are working tirelessly to help all. Join us please. Raise awareness, ask your medical providers about using it to help you.
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Old 05-26-2013, 02:46 PM   #12 (permalink)
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Default Re: Propofol reverses symptoms

The least we should do is to ask for propofol in case of any operation requiring anestethics, and to make as good record as possible of any changes in the symptoms after the sedation.
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Old 05-28-2013, 09:11 AM   #13 (permalink)
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Default Re: Propofol reverses symptoms

Now that I look back, my neurologic exams after both the cervical and lumbar spinal fusion significantly improved. I specifically member being able to walk my heels after the lumbar fusion. That was a 5 hour surgery so I'm assuming this was probably used. Cervical fusion shorter but the hand it's better for a while. Too bad it such a difficult drug to administer and monitor.
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Old 05-28-2013, 06:28 PM   #14 (permalink)
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Default Re: Propofol reverses symptoms

Quote:
Originally Posted by hjlindley View Post
Now that I look back, my neurologic exams after both the cervical and lumbar spinal fusion significantly improved. I specifically member being able to walk my heels after the lumbar fusion. That was a 5 hour surgery so I'm assuming this was probably used. Cervical fusion shorter but the hand it's better for a while. Too bad it such a difficult drug to administer and monitor.
Please find out exactly what nesthesia you recieved and join the discussion at the forum on als.net also. We need to add your result to the growing list.
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Old 05-28-2013, 10:44 PM   #15 (permalink)
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Default Re: Propofol reverses symptoms

@hjlindley:

Do as Cypress tells you and try to find out what kind of anesthesic was used on you.
There is an ongoing thread about Propofol at ALS---TDI Forum and they are going to submit data of some PALS who were treated with this anesthesic and noticed some improvements to ALS Untangled for review.

NH

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