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The research and time that all of the members of this board put into this nasty disease truly inspires me. I sometimes feel like some on the board may get annoyed with me being here, as I have been given an unknown motor neuron disease diagnosis, and not official ALS diagnosis. Some days I am so down with the severity of my symptoms, but reading about do it yourself research combined with medical research gives me hope to move on along. I am a lawyer by trade licensed in Florida and want to provide PRO Bono legal services to those affected with MND.I am also going to thoroughly conduct my own research so maybe I can contribute to this board. I do not dismiss the medical profession but do feel that as Pals and MND sufferers we must take research into out own hands. I am looking for friends on this board to give me a reason to get up everyday to fight as hard as I can. Like many of us, I was given a cold you have six months to live without a vent. My response was well I guess that is why they were created so that I may live. These diseases will humble the strongest of souls, but the members here give me so much hope,
Regards to all
 
Hello all,

This was posted by a PALS at ALS-TDI Forums, who today underwent a procedure (non-ALS related) which required anesthesia and he requested the anesthesiologist to use Propofol as the anesthetic.
Per his post, the results are very encouraging.


See here:



"jchexpress"
Posted: Wednesday, June 26, 2013 5:33:56 PM


Been out of procedure for now a few hours. Swallowing is even better than my last procedure at the moment. Just ate an entire meal after fasting for so long with absolutely no choking or food getting stuck like normal. I do have some pain in my throat which Doc said it was from the scope and should subside. I had 150mg Propofol for my last procedure and this time the anesthesiologist said I got 400mg. I have gained strength in all weak areas on my right side at the moment. Absolutely no shaking from hand weakness like I had before (I even showed the Doc and Anesthesiologist before and after and both were intrigued). So far so good folks. I'm beginning to be a believer in ol Prop. Will have EMG & PFT done Monday to compare from not long ago. I just want to seize every moment for the next month now. First up is a basketball game with my son. Thanks for your encouraging words to those who gave them. I have to say, I was a bit nervous about this procedure this time and am relieved I came out of it.

Jason


If I had the opportunity, I would definitely go for it.



Carlos
 
will als-untangled going to jump on this in near future? they shoot down most things that have not got through three phases of testing, good or bad
 
will als-untangled going to jump on this in near future? they shoot down most things that have not got through three phases of testing, good or bad

@Pearshoot:

Yes, ALS/Untangled has already been notified of Propofol on PALS and they are currently gathering evidence of the claims to conduct a thorough review of it.
Stay tuned.


Carlos
 
ALSUntangled review near completion my source tells me.
 
All,
There is ample evidence now(and has been) that propofol reverses als symptoms in a size able subset of pals. Time for each one of you to push for receiving treatment. What are your options?
Typical procedures such as colonoscopy,endoscopy,orthopedic ,dental,pain management. Be creative and tenacious.
YOU HAVE SOME CONTROL,,,USE IT BEFORE IT IS TOO LATE

Use all the connections you have, print documents supporting our findings and present them to your physio when you consult. Find out ahead of time who will be doing your anesthesia and try to get a maximized dose and length under anesthesia. If you will be on iv post op sedation, request propofol.

Blessing,
Jim
I am going to live forever or die trying!
 
Thanks for the suggestions, Cypress.
I will explore which ones of these outlined options I can come up with or I may need in order to get a shot of Propofol and see what it does to my ALS symptoms.


Carlos
 
Carlos,
You are most welcome and you deserve relief! Hope it comes swiftly for you . The burden it lifts is massive!
Blessings, jim
 
Jim...how are you doing? Have your improvements lasted?

I don't have a warm and fuzzy feeling about ALSUT backing this but hopefully I am wrong. The guy in charge has ties to many many huge pharmaceuticals and it's a little like getting Exxon Mobil to back wind and solar energy.

Kudos to Jason on getting the propofol and sharing results!
 
@dbltree:

It wouldn't surprise me at all if ALS-Untangled doesn't endorse Propofol as a treatment for PALS. They may have conflict of interest for sure. I know they have ties to big drug companies.
They didn't back the D.P. either.

But, I would rather go with the anecdotal evidence by several PALS who showed improvement after being treated with Propofol than whatever ALS-Untangled may report.


Carlos
 
An UPDATE by Jason (the PALS at ALS-TDI Forums who very recently received Propofol as anesthetic when he underwent a non-ALS related procedure that required anesthesia):

QUOTE:



jchexpress Posted: Monday, July 01, 2013 5:04:17 PM

Rank: Advanced Member

Groups: Member

Joined: 3/3/2007
Posts: 849
Location: USA


Hi my friends,

I wouldn't trust or believe that guy worth a darn Robert. That Jason is a liar, cheater and a buttwad too.

I wanted to let all you know I am out of ICU and in a regular room now. I hated ICU. Feels like you are in prison. Not sure how long I will be here as it is a nasty strain so they are adjusting meds accordingly to try and get rid of it.

The good news is I can still eat perfectly fine without coughing or choking and still retain the extra strength on my right side (especially my hand). Thanks to Louis for discovering this drug as I am a firm believer now that it should work on most PALS without a doubt. I agree with Louis that dosage for positive results must be in the 400mg range (which is what I received) or even a bit higher if possible. I am unsure how a prolonged treatment would happen in terms of dosages. I guess maybe via IV every 2-4 weeks.

Hope you all are doing o.k. You know you all are family to me since I don't have any except my wife and two kids.

Love all you guys and gals and thanks for your words of support. They mean so much. I don't know how, but if and when I get out of here, I am spending all my efforts on trying to get Propofol into ALS patients NOW or ASAP. There is absolutely no doubt in my mind that it helped halt and reverse my symptoms for a short period of time and I am one of the biggest skeptics you'll meet. Just ask Ron.

Best to all,

Jason



As you guys and gals can see, it looks like Propofol indeed improves the symptoms of people suffering from ALS/MND.
It's worth it a try whenever you can undergo any procedure that requires anesthesia.
I'm seriously considering it myself.



Carlos
 
Last edited:
An updated list of PALS who underwent non-ALS procedures on which Propofol was used as anesthetic and the improvements they have felt on their ALS symptoms.

NOTE: This was copied/pasted from a poster at ALS-TDI Forums.



ichisan Posted: Tuesday, July 02, 2013 12:37:07 AM

Rank: Advanced Member

Groups: Member

Joined: 12/4/2011
Posts: 1,858
Location: United States


Propofol Testimonies

Date: July 1, 2013

We now have eight ALS patients who reported significant improvements after undergoing Propofol anesthesia. This is solid evidence that Propofol works. Pass the word.


Patient: Cypress
Improvements: increased dexterity, better speech and swallowing
Dose: 1100 mg
When noticed: same day
Duration: noticeable regress after day 9

Patient: Jason
Improvements: normal pft and emg after, increased right arm/shoulder strength, better swallowing with no choking
Dose: 150mg initially then small incremental doses after
When noticed: same day, right after the procedure
Duration: about 1 month
Note: Jason received 400 mg of propofol during a second procedure on June 26 and, a few hours later, reported stronger improvements than he experienced the first time.

Patient: GusGargoyle
Improvements: complete remission of symptoms
Dose: 1140 mg
When noticed: 1 day after
Duration: about 2 weeks

Patient: lochnerd
Improvements: better speech and swallowing after 2 procedures
Dose: standard sedation dose
When noticed: about 2 days after
Duration: about 1 week

Patient: ichisan's wife
Improvements: spectacular improvements on 3 occasions, complete remission once
Dose: approximately 1400, 1200, 1100 mg
When noticed: next day
Duration: from a few days to 2 weeks

Patient: hjlindley
Improvements: improved neurological exams after spine surgery, improved walking
Dose: unknown
When noticed: unknown
Duration: unknown
Note: type of anesthetic is not yet known

Patient: laluzdelaman's PALS
Improvements: experienced a steadying of his gait while walking up and downstairs
Dose: 200 mg
When noticed: unknown
Duration: unknown

Patient: Lefteris's wife
Improvements: slight improvements in all areas
Dose: 200 mg
When noticed: unknown
Duration: unknown


Please correct any mistake above and/or add more data as needed. Also, let us know if you noticed improvements after receiving a different type of anesthetic such as sevoflurane, isoflurane, halothane, etc.

Louis





Carlos
 
Here is some BioChemical evidence of why this molecule/compound might be working on PALS.

Note that the existence of defective inhibitory GABA-A alpha-1 receptor in ALS patients is not a hypothesis. It is an actual research finding. The inhibitory glycine alpha-1 receptors are also known to be defective in ALS patients. What really makes this interesting is that those receptors are used for inhibition by both the CNS and the immune system. In other words they are responsible for both hypnosis (sleep) and the suppression of inflammation. This is the reason that Propofol is such a powerful anti-inflammatory substance: it directly activates those specific inhibitory receptors and suppresses the elevated inflammatory response in the brain and spinal cord.

But Propofol appears to be doing much more than that. It seems to be able to restore the receptors to their normal inhibitory function and this reversal of symptoms can last a few weeks if the abnormal inflammation is completely suppressed in an ALS patient, the patient may see a complete remission of symptoms for a longer period, possibly years.

As an aside, why does Propofol reduce ALS-caused inflammation in the brain and spinal cord and not some of the other powerful anti-inflammatory drugs? The answer is that there are many types of inflammation. It all has to do with activating the correct receptors. This is why Propofol works and why the arthritis drugs do not.


I know this explanation might be over your head to understand it but...in terms of layman, this molecule may show some promise on treating the symptoms of MND/ALS.



Regards,



Carlos
 
Carlos, thanks for the update on the hypothesized biochemical mechanism by which weakness is reversed. Hopefully that will incite the research community to regard the benefit as more than anecdotal.
 
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