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Starvedforsurf
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Location: San Diego, CA

Hello Everyone

Post by Starvedforsurf »

Hello,

I was diagnosed with MS in 2012. A smoker since I was 15, I started getting stabing headaches at the age of 39. My doctor ran blood tests and did not find any thing, but an MRI found a lesion in the frontal left lobe. I was referred to a specialist who sent me in for a spinal tap, this was the confirmation. I started Copaxon daily and went through a few doctors for a couple years before my wife was diagnosed with ALS in 2015. My symptoms had always been headaches which were delt with via opiates. I stopped Copaxone and focused on my wife who died in 2017. Soon after I was able to get off the opiates. In late 2019 I had my first bad experience with losing vision in my left eye. Vision has returned but is not 100%. I was going to start Ocrevus infusions but COVID hit and scared me away. I had 2 more flair ups in 2021 with me losing some of my motor skills. The first in my right hand and arm, the second causing my legs to become weak and ache. I regained most of my arm function and strength but my legs are still a little wobbly making it very difficult for me to surf. Both of these cause by lesions in the spine. One good thing that came out the hospital visits was that an MRI found a fat cranial aneurysm which was later coiled in order to keep it from bursting. I did get in soon after for my Ocrevus infusion and have received the second infusion a couple months ago. I still have headaches and feel like I am on a slow cognitive decline since the start which has been affecting my career. This is depressing I feel like I put up such a good fight with no complaints and do my best to raise my two sons, but I am getting tired. Sorry, I guess I just realized that maybe I came here to vent. I hope everyone is doing well.
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Scott1
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Re: Hello Everyone

Post by Scott1 »

Hi,

It's very nice to hear from you and you are very welcome. There are a lot of good ideas and different points of view on here so please raise any issue you wish to and someone will likely respond.
Apart from the Ocrevus, are there any other things you are trying?

Regards,
Starvedforsurf
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Joined: Sat May 07, 2022 3:27 pm
Location: San Diego, CA

Re: Hello Everyone

Post by Starvedforsurf »

Hello, and thank you for the welcome. Medication wise, no. I am not on any other prescribed therapy.

I did completely changed my diet though by dropping most carbs and no more sugar. Kind of running a hybrid keeto/paloe routine now. I do not hunt or farm but basically if I can hunt/catch it or harvest it, aside from oils, then I can eat it. I take a list of supplements which I will add below. If you have questions on what they are or why I take them I will relpy. Aside from this after kicking pain killers I now use cannabis in the evenings for pain.

Vitamin D3+K2
Magnesium Glycinate
Magnesium Taurate
Magnesium Threonate
EPA 2000 DHA 900 Fish Oil
Stress B - Complex
Turmeric
CoQ10 100
N-Acetyl Glucosamine
Reverse Cell - contains the following
- Betaine Anhydrous (Trimethylglycine) 85mg
- Nicotinamide Riboside 415mg
- Quercetin Phytosome 250mg
- Trans-Resveratrol 150mg

Whey protein powder and BCAA's to assist with maintaining muscle. I also juice a lot of vegetables, broccoli sprouts mainly for the sulforaphane.

Best Regards

Starvedforsurf
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Scott1
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Re: Hello Everyone

Post by Scott1 »

Hi,

Do you still smoke?

Regards,
Starvedforsurf
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Location: San Diego, CA

Re: Hello Everyone

Post by Starvedforsurf »

Yes. Socially. No longer daily but I know, I am still an idiot.
jimmylegs
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Re: Hello Everyone

Post by jimmylegs »

hi i second Scott's welcome and thank you for all the info you've shared. you're braver than I; I still haven't followed through with the recommended Ocrevus idea. i bring 16 yrs as a patient and self-taught nutrition enthusiast to the conversation, and since the start of 2021, the hormone component has made itself evident.

would you be comfortable sharing any more detail (dosages, timing, combinations) regarding your supplement regimen?
may i ask if you have plasma or serum levels on file, or any other measures of the nutrients you're supplementing?
one thing that surprised me early on were the interactions between lifestyle factors and nutrient status.

i'm a little surprised by some of this study's findings, but i'd say do keep up the physical activity for as long as you can!:

Predictors of Multiple Sclerosis Severity Score in Patients with Multiple Sclerosis
https://www.frontiersin.org/articles/10 ... 66308/full

for myself, i feel like i'm doing a little better on some hormone replacement therapy. i think doing what i can with physical activity, might be helping rehab some of the emerging physical challenges.

out of curiosity: where do you surf? i'm a terrible surfer - i tried lol
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Scott1
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Re: Hello Everyone

Post by Scott1 »

Hi,
When scientists try to give the different receptors in our body a name they often pick the name of the substance in their laboratory that made the receptor open the most. A very common receptor, particularly in skeletal muscles, is called a nicotinic receptor. It may be our most common receptor. If you smoke, you are increasing the probability that it will assist those receptors to open. They are at the very start of the process that leads to muscle contraction. So, remember when you smoke you will be encouraging the instability in your muscles. Stopping smoking won't prevent it but I doubt you want to encourage it.
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NHE
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Re: Hello Everyone

Post by NHE »

Starvedforsurf wrote: Thu May 19, 2022 6:11 pm Yes. Socially. No longer daily but I know, I am still an idiot.
Smoking is well known to accelerate MS progression.

https://pubmed.ncbi.nlm.nih.gov/31841592/

More... https://pubmed.ncbi.nlm.nih.gov/?term=S ... s%E2%80%9D

Not only that, but the human body is not meant to be a chimney.

Image

NHE
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Re: Hello Everyone

Post by NHE »

Oh, you may wish to do some reading at https://www.thetruth.com/

Cigarette additives include ammonia and licorice. Ammonia because it lets the nicotine enter your bloodstream faster creating a bigger rush. Licorice because it acts as a bronchodilator when burned allowing the smoke to penetrate deeper into the lungs. These and other additives are engineered to make cigarettes as addictive as possible.
Starvedforsurf
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Joined: Sat May 07, 2022 3:27 pm
Location: San Diego, CA

Re: Hello Everyone

Post by Starvedforsurf »

Scott1, that is interesting. I gotta say thank you for your delivery as well.

NHE, thanks for all the info. It's not the lack of knowledge, it's the addiction, the crutch, and the pure enjoyment of the ritual. I like smoking.

But after confessing my honest stupidity here, I have re-examined what I am doing and how this habit needs to go. I took Friday May 27th off until Monday June 6th. This time is being spent just me and my girlfriend. She doesn't allow me to smoke. So I went that time with no issue and felt good. But I had one the other day. The smoker in me must die.

Jimmylegs, I was born and raised in San Diego. I grew up surfing the Crystal Pier. I'll give you a view of my typical day in a summary.

6am: coffee with ghee and MCT

8am: second cup with all of my supplements excluding the Magnesium Threonate.

Noon: very large salad with an avocado, ACV, and a lime, and a ton of olive oil for dressing. A Whey protein shake.

6-8pm: lots of protein like fish, beef, chicken, or pork, and veggies. BCAA's. Revercell and CoQ10 again plus the Magnesium Threonate.

I agree with you on staying active. I surfed 7 times during that vacation with my girlfriend and I felt great. I also found some relief in taking tomkat ali with fadogia agrestis over the last few months. This combination over short periods of time, and breaks in between has given me a bit more life. I would also like to look into therapy for this, but have fears. Although, hey, I already pulled the trigger on Ocrevus.
jimmylegs
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Re: Hello Everyone

Post by jimmylegs »

nice! i tried (and failed) to learn at Lancelin in Western Australia. had a good time :) glad to hear you felt great taking some vacay time to surf!

re supplements, i'm more informed re essential micronutrients and have spent less time on the macros.
that said though, looks like you're paying a lot of attn to healthy fats. do you have any related lab work? i only just recently was able to arrange for an omega 3 index test - interesting stuff.
re the supplements list, how much of each? can you share product detail links for your d3, magnesium products, b-complex, and coQ10, iima? again, do you happen to have any related test results?

i hear you re treatment concerns. i'm still hopeful that one day my preferred treatment option will become a viable option :) we can dream!
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