New neuro

[Jules A]

I’m not sure why, but for me CIS is much easier to accept and say vs the other.

I guess i feel that ive been given extra “good” years , even if it’s only 5 before I progress. With all I’m doing hopefully it’s longer.

If/when I do progress I’ll see how I feel at that time.

Just hopefully the specialist I see agrees with the second neurologist opinion, but I gotta wait till the end of the month to see I guess.

I was hoping for 5 good years and it turned into 10 now I'm getting greedy and hoping for 20. I'm in my 50s so I won't feel as cheated if things turn to crud now because I legit thought I was going to be bedridden within months of my 40th birthday. So despite having this miserable disease I do feel blessed and plan to continue doing all I can while I can.

[Mamabug]

Mamabug


I think sea salt is what I have been using when I do use salt. I have been trying so hard to avoid it I am not really sure what type I have (if any). I know I have been slacking the past few days on my diet and I can defiantly tell the difference. I have less energy and don’t want to really do anything.

My doc recommends including, not avoiding, sea salt. He says regular salt is processed, bleached and refined.

In contrast, most sea salt is naturally harvested and dried and minimally processed. They contain a wealth of trace minerals and electrolytes that are healthy for us, not detrimental.

Again, this is natural sea salt that you buy at a health food store. Not Morton's from the grocery store.

[Jules A]

Anyone with any info/experience on lipoic acid? I was looking an article, haven't gotten the actual article yet and I didn't see in the abstract the number of participants which is important to me when considering validity.

Quoted from https://www.ncbi.nlm.nih.gov/pmc/art...C5331099/#CR35

"Moreover, Khalili et al. found a strong correlation between oral intake of lipoic acid (1.2 mg/day) and decrease in the levels of pro-inflammatory cytokines, including INF-γ, ICAM-1, and anti-inflammatory cytokines, including TGF-β and IL-4, compared with placebo group"

Khalili M, Azimi A, Izadi V, et al. Does lipoic acid consumption affect the cytokine profile in multiple sclerosis patients: a double-blind, placebo-controlled, randomized clinical trial. Neuroimmunomodulation. 2014;21(6):291–296.

[Daisycat]

Jules

i still feel like I’m going to wake up and truly lose everything. I think that’s part of why I can’t sleep.

I want to make it to retirement age. That’s not to much to ask.

And I have an article I can post tomorrow about lipoid acid. I’m on my phone and it makes typing hard.

[Myoak]

Hello, here is study suggesting benefit of Alpha Lipoic Acid in SPMS...

Alpha Lipoic Acid for neuroprotection in secondary progressive multiple sclerosis: results of a randomized placebo-controlled pilot trial

ECTRIMS Online Library. Spain R. Sep 16, 2016; 147064

Abstract Category: Therapy - disease modifying - Treatment of progressive MS

Objective: To determine if Lipoic acid (LA) is neuroprotective, reduces disability and improves quality of life, and is safe in a secondary progressive multiple sclerosis (SPMS) population.

Background: LA is an inexpensive and readily-available oral antioxidant. In the animal model of MS, LA decreases inflammation and reduces optic nerve and spinal cord atrophy. LA reaches therapeutic blood levels and is tolerated at high doses in people with MS...

Methods: A 96 week, double-blind, randomized controlled trial of 1200mg daily LA versus placebo. Primary outcome was reduction in MRI whole brain atrophy. Secondary outcomes included atrophy of brain substructures and spinal cord, retinal and macular atrophy, changes in neurological exam, walking, cognition, fatigue, and quality of life...

Results: Of the 54 randomized participants, 51 (27 LA and 24 placebo) took at least one dose of study drug and were included in analysis.... Annualized rate of whole brain atrophy was significantly lower at 96 weeks in the LA group compared to placebo (slope= -0.22 vs. -0.65, p=0.004). On treatment, two-year volume loss was -0.4 % (0.7) for LA and (-1.3 % (1.1) for placebo (p=0.006). Walking speed improved in the LA group (p=0.057).

Conclusions: This highly promising pilot trial of LA demonstrated a significant reduction in whole brain atrophy and suggested a clinical benefit in SPMS while maintaining safety, tolerability, and high compliance over 96 weeks. A larger trial is necessary to confirm the neuroprotective effects, explore clinical benefits, and ensure the safety of LA in progressive MS populations.

[Jules A]

Hello, here is study suggesting benefit of Alpha Lipoic Acid in SPMS...

Alpha Lipoic Acid for neuroprotection in secondary progressive multiple sclerosis: results of a randomized placebo-controlled pilot trial

ECTRIMS Online Library. Spain R. Sep 16, 2016; 147064

Abstract Category: Therapy - disease modifying - Treatment of progressive MS

Objective: To determine if Lipoic acid (LA) is neuroprotective, reduces disability and improves quality of life, and is safe in a secondary progressive multiple sclerosis (SPMS) population.

Background: LA is an inexpensive and readily-available oral antioxidant. In the animal model of MS, LA decreases inflammation and reduces optic nerve and spinal cord atrophy. LA reaches therapeutic blood levels and is tolerated at high doses in people with MS...

Methods: A 96 week, double-blind, randomized controlled trial of 1200mg daily LA versus placebo. Primary outcome was reduction in MRI whole brain atrophy. Secondary outcomes included atrophy of brain substructures and spinal cord, retinal and macular atrophy, changes in neurological exam, walking, cognition, fatigue, and quality of life...

Results: Of the 54 randomized participants, 51 (27 LA and 24 placebo) took at least one dose of study drug and were included in analysis.... Annualized rate of whole brain atrophy was significantly lower at 96 weeks in the LA group compared to placebo (slope= -0.22 vs. -0.65, p=0.004). On treatment, two-year volume loss was -0.4 % (0.7) for LA and (-1.3 % (1.1) for placebo (p=0.006). Walking speed improved in the LA group (p=0.057).

Conclusions: This highly promising pilot trial of LA demonstrated a significant reduction in whole brain atrophy and suggested a clinical benefit in SPMS while maintaining safety, tolerability, and high compliance over 96 weeks. A larger trial is necessary to confirm the neuroprotective effects, explore clinical benefits, and ensure the safety of LA in progressive MS populations.

Thanks! Tiny n but nice time frame and excellent results.

[Myoak]

Thanks! Tiny n but nice time frame and excellent results.

This type of study will always be tiny. No one, and I do mean no one, including disease societies, is going to fund a large study costing millions of dollars for anything that can be purchased inexpensively OTC and would compete with something of similar effectiveness which is expensive and extremely profitable for the pharma industry.

If pharma could patent Alpha Lipoic Acid large, multi-year studies with hundreds or thousands would already have taken place. Large studies of ALA will never occur because there is no financial reason justifying them.

You may want to check out Dr. Burt Berkson's book... The Alpha Lipoic Acid Breakthrough. He outlines several huge health benefits and was the CDC's principle investigator on ALA for decades. As a note... I have taken family members to Berkson's practice in New Mexico. He retired but his son has the practice now.

BTW, my mother (still at her home living on her own) will turn 99 in two months has taken ALA for years.