Updated list of known patients who reported significant improvements after propofol

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EJTUNow

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Updated list of known patients who reported significant improvements after propofol anesthesia.

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
Dose: 150mg initially then small incremental doses after
When noticed: same day, right after the procedure
Duration: about 1 month

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


Please correct any mistake above and/or add more data as needed.

Louis
 
How severe were their symptoms before the propofol?
 
How severe were their symptoms before the propofol?

Barbie, the majority of those PALS mentioned on his post, are forum members at ALS--TDI Forum. Some of them hardly come here to post.
I think if you register there, you can ask directly to a each one of them how bad their symptoms were before being exposed to this drug.

I think "EJTUNow" just gathered that information based in what they told him back there at those Forums after undergoing anesthesia with that product.


NH
 
Alsuntangled requesting data on PALS who have tried propofol. Please send to [email protected] or fax to 919 668-2901.

Quote:
Good morning Dr Bedlak,
I had 25 mg on June 4, 2013. No discernible benefit.
best,
Ed
BTW We are still hard at work attempting to help every PALS
 
I read up several papers on this anesthetic and Yes I have followed the ongoing thread at ALSTDI.
It seems promising, as some who have be anesthetized for a medical procedure have seen some
short term improvement in their symptoms. Reading through the list of things it can do “it acts as
an antioxidant: it scavenges free radicals, and decreases lipid peroxidation, increases glutathione
levels in the tissues, it activates γ-aminobutyric acid (GABAA) receptors, inhibits glutamate receptors,
and reduces extracellular glutamate levels by either inhibiting Na+ channel-dependent glutamate
release or by enhancing glutamate uptake, Propofol may also, inhibit the NMDA receptor and reduce
calcium influx through slow calcium channels.” In 1996, I believe, disodium edetate (EDTA) was
added, which has antibacterial and antifungal properties but also is a “chelator of divalent ions such
as calcium, magnesium, and zinc”. Virtually everything you require in one treatment course. Surprising
it hasn’t been picked before now.

One paper I read described a phenomenon called neurite retraction, where the neurite’s (tentacles)
retract back to the body during exposure to Propofol but it was “time-dependent and reversible” which
begs the question is it also a neuron stimulant, if short term symptom reversal is possible.

Also, not all Propofol is fortified with EDTA, some contain sodium metabisulfite, so you have to also
question whether those who did not see improvement had the former or less likely, latter.

Propofol has suppressive effects on inflammatory cytokines but unfortunately does not seem to stimulate
anti-inflammatory cytokines.
 
There is a PALS at ALS-TDI Forums who will undergo a surgical procedure ending this month, on the 26th.
He already requested Propofol to be used as anesthetic for the procedure.
He promised to report back, should he notice any improvements on his ALS symptoms.

Carlos
 
I mentioned this on another group, and one gal said after she got something when she had her DPS done, she could talk clearly for the first time in over a year. She is checking to see what she was given. it didn't last long, but she talked clearly, and others noticed it too.
 
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