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-   -   Spingolin ????? (https://www.neurotalk.org/pn-tips-resources-supplements-and-other-treatments/222885-spingolin.html)

mrsD 08-18-2015 02:20 AM

Quote:

Originally Posted by Mpiazza000 (Post 1163531)
Mrsd, regarding the bovine comment. But don't we carry that risk anyway whenever we eat beef?

Yes, to a certain extent.. But the central nervous tissue in beef holds the
greatest risk.

Just visit any good Mad Cow site and see. The prions are concentrated in the central nervous system.

Everything we consume as food and our water are contaminated
Today. So it becomes a problem of doing the least dangerous.
The cyanobacteria in our water is becoming concerning as well.
Listeria in dairy and other processed food is becoming more common.
All meats carry illness risks.
Salmonella in peanuts and peanut butter and other veggies.
Legionierres in the air we breathe.
The list is really long and alarming.
We are lucky indeed to dodge these "bullets" daily.

So I think looking for more risk should be carefully evaluated
And avoided if possible. Just my opinion.

kiwi33 08-18-2015 06:07 AM

I strongly agree with what mrsD and DejaVu have said about Sphingolin - i would not touch it with the proverbial barge-pole.

Who knows what you are getting when you consume a product extracted from cattle brains? It could well include the misfolded form of prion protein - I doubt that the sellers of Sphingolin are capable of assessing this.

Misfolded prion protein will kill you - it will (through well-understood biochemistry) convert your normal form of prion protein into its lethal form.

The alleged benefit of Sphingolin is not worth the risk in my opinion.

Mpiazza000 08-18-2015 11:06 AM

how about inosine?

Patrick Winter 08-19-2015 04:05 PM

Quote:

Originally Posted by Mpiazza000 (Post 1163642)
how about inosine?

I have been wary of taking Inosine because of the fact that I heard it can cause gout and/or kidney stones.

"Although no side effects have been reported with the use of inosine, long-term use should be avoided. A very preliminary double-blind crossover study that enrolled 7 participants suggests that high doses of inosine (5,000 to 10,000 mg per day for 5 to 10 days) may increase the risk of uric acid–related problems, such as gout or kidney stones."


So, would it be risky to take the 1000mg that is recommended for Neuropathy sufferers? :confused: Probably not. Tough call though. I am still considering it. I know there are some folks in this forum who take it and think they have seen its benefits.

Mpiazza000 08-19-2015 04:20 PM

Quote:

Originally Posted by Patrick Winter (Post 1164134)
I have been wary of taking Inosine because of the fact that I heard it can cause gout and/or kidney stones.

"Although no side effects have been reported with the use of inosine, long-term use should be avoided. A very preliminary double-blind crossover study that enrolled 7 participants suggests that high doses of inosine (5,000 to 10,000 mg per day for 5 to 10 days) may increase the risk of uric acid–related problems, such as gout or kidney stones."


So, would it be risky to take the 1000mg that is recommended for Neuropathy sufferers? :confused: Probably not. Tough call though. I am still considering it. I know there are some folks in this forum who take it and think they have seen its benefits.

Drink more water, monitor ur ur icon acid level.

Mpiazza000 08-19-2015 04:21 PM

http://www.healthline.com/health-new...ymptoms-030915

Vesicare is safe

Patrick Winter 08-19-2015 04:25 PM

Quote:

Originally Posted by Mpiazza000 (Post 1164139)
Drink more water, monitor ur ur icon acid level.


I drink tons of water and seltzer. No issue there. I may give it a shot. Thanks.

Patrick Winter 08-19-2015 04:31 PM

Quote:

Originally Posted by Mpiazza000 (Post 1164140)

Interesting. There are doctors out there who say Myelin can't be regrown at all. Don't you love them. So hopeful and optimistic. I know there was a study years ago that said even Topamax helped regrow mylein. Topamax supposedly is just brutal to take becuase if the side effects.

I wonder though if the brain related damaged mylein is different than the small fiber related mylein. I don't see a them saying it applies to all mylein damage just the brain related. Maybe someone on here knows what's up with that. Of course its mice so, not exactly a confirmed cure. Would need clinical studies. but liek I say why is it reason to panic when mice get cancer from things like aspartame, but when we see something hopeful in mice we poo poo it and say, its just mice doesnt mean much.

Judgoing by the comments section below it doesnt look very hopeful but those are MS patients, not SFN sufferers.

Patrick Winter 08-19-2015 04:46 PM

Quote:

Originally Posted by Mpiazza000 (Post 1164140)

This is from 2003, it makes Topamax sound like a miracle cure. But, from what i have seen the side effects from it are pretty harsh.

"Topiramate improves both symptoms and objective measurements of peripheral neuropathy while also lowering levels of total cholesterol, blood glucose, and blood pressure and promoting significant weight loss," Dr. Vinik said.

Because previous trials had shown that high starting doses of topiramate can be toxic, the patients were administered 25 mg/day, titrated over 42 days to the maximum tolerated dose or 100 mg/day. The patients received the anticonvulsant for 84 more days. By the end of trial, dendrite length and peroneal nerve amplitude had increased, and total neuropathy scores had decreased from 14 to 11.8, Dr. Vinik reported. More important, "intra-epidermal nerve fibers actually grew back," he said. "That was the most dramatic observation."


http://www.medscape.com/viewarticle/457287

Mpiazza000 08-19-2015 04:49 PM

Quote:

Originally Posted by Patrick Winter (Post 1164155)
This is from 2003, it makes Topamax sound like a miracle cure. But, from what i have seen the side effects from it are pretty harsh.

"Topiramate improves both symptoms and objective measurements of peripheral neuropathy while also lowering levels of total cholesterol, blood glucose, and blood pressure and promoting significant weight loss," Dr. Vinik said.

http://www.medscape.com/viewarticle/457287

Anticonvulsant in general can help pain from neuropathy because it inhibits neuro firing. But if u inhibits normal firing. What do you expect as a side effect, and it would be pretty harsh. Gabapentin comes out the top in terms of least side effect for neuropathy hence prescriber use it often, until now the updated guideline recommends antidepressant more. But none of these really help with nerve regeneration

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