So my DH was diagnosed with MS....

[SereneHome]

We both are still in shock....

But I would really like to hear the good, the bad and the ugly that anyone wants to share. I know meds are going to be VERY expensive. So of course I am worried about that. I can't even imagine how our lives might change. I am trying to see if there is anything else besides the meds that can be helpful.

[Chris in VA]

I'm sorry to hear that. I do have a friend in her early 40s who was diagnosed maybe 5-8 years ago. She had a rough bit but has been pretty symptom-free for a few years, so I think it can go into a remission-like state. 

Hang in there. Know you can vent here anytime, should you need to. ♥️

[itsheresomewhere]

I have a good friend who has had it for years.  She does only certain supplements and a very special exercise program.  I can ask what all she takes later if you are interested.  For her, she had way too many side effects with the meds that led her down the this road. She is still very active but needs a bit more rest than she used too. Her neurologist is always very pleased with her progress as they expected her to be in a wheelchair years ago.

Edited October 16, 2019 by itsheresomewhere

[SereneHome]

Just now, itsheresomewhere said:

I have a good friend who has had it for years.  She does only certain supplements and a very special exercise program.  I can ask what all she takes later if you are interested.  For her, she had way too many side effects with the meds that led her down the this road. She is still very active but needs a bit more rest than she used too.

Yes, please ask, if you don't mind

He picked injection type meds  - I think it was the one with least side effects.

 

[catz]

I have a cousin who was diagnosed over 20 years ago now. Meds have been helpful to her.  But she does feel like prioritizing clean living has also been helpful to her- clean diet, exercise, stress maintenance (including treatment for anxiety or depression if that comes up). plenty of sleep.  She's had periods of remission and has a good quality of life.   She has been working throughout.

I'm sorry you are dealing with this!  But I think there are a lot of positive things happening with MS treatments.  Thinking of you as you make adjustments to your new normal!  ❤️

[itsheresomewhere]

1 minute ago, SereneHome said:

Yes, please ask, if you don't mind

He picked injection type meds  - I think it was the one with least side effects.

 

I will ask her later.  I know she tried the injections and a lot of pills.  The one thing I know she added recently was CBD for the nerve pain in her feet. 

[livetoread]

I know a family friend with ms. For her, there was a link with celiac, and she got some relief following a celiac diet. I have no idea what other treatment she used as well.

[Ethel Mertz]

What type of MS does he have? There are 4 types: clinically isolated syndrome, relapsing-remitting (the most common), secondary progressive, and primary progressive (the least common). I was diagnosed with primary progressive two years ago.

[SereneHome]

5 minutes ago, Ethel Mertz said:

What type of MS does he have? There are 4 types: clinically isolated syndrome, relapsing-remitting (the most common), secondary progressive, and primary progressive (the least common). I was diagnosed with primary progressive two years ago.

I don't know.....He said that dr told him there are 3 types of lesions and he has the middle one - average

How are YOU holding up?

 

Edited October 16, 2019 by SereneHome

[Catwoman]

Wow, what a terrible shock. I’m so sorry to hear about his diagnosis. 

[Scarlett]

I am so sorry.  I don’t have any experience with it, but wanted to offer a hug.  

[Ranger]

Terry Wahls is a doctor with MS who shares her story in The Wahls Protocol and I think it is very helpful. 

[Ethel Mertz]

11 minutes ago, SereneHome said:

I don't know.....He said that dr told him there are 3 types of lesions and he has the middle one - average

How are YOU holding up?

 

Sounds like he has relapsing-remitting. There are a lot of med choices for that and it is quite likely that he will enjoy decent periods of remission. MS doesn't shorten life expectancy. Your local MS Society can be a good support contact and I highly recommend getting in touch with them. 

We have installed grab bars in the bathrooms, rails around the toilet,  and a ramp going down one step into the garage. A local group installed all that for free. Primary Progressive MS (PPMS) only has one drug approved to slow progression (Ocrevus). I am not on that drug, but am treating symptoms with various meds. I use a cane and occasionally a Walker. Only use a wheelchair if I have to go a long way.  Overwhelming fatigue (I often feel like a bowl of oatmeal that someone is trying to take for a walk), temperature sensitivity, myoclonic jerking, and brain fog are among my symptoms. Generally speaking, I can do one thing a day; sometimes that one thing is a shower; other times it is a meeting or social occasion. I've stopped homeschooling and put our teen in the local high school, where he is, thankfully, thriving. But I must stress that this is PPMS, which it doesn't sound like your DH has.

Re the Wahls Protocol - it is not viewed favorably in the MS patient/neurologist community. Sort of like the vaccine/autism issue. 

My best to you and your DH. And please do contact your local MS Society for support. 

[SereneHome]

7 minutes ago, Ethel Mertz said:

Sounds like he has relapsing-remitting. There are a lot of med choices for that and it is quite likely that he will enjoy decent periods of remission. MS doesn't shorten life expectancy. Your local MS Society can be a good support contact and I highly recommend getting in touch with them. 

We have installed grab bars in the bathrooms, rails around the toilet,  and a ramp going down one step into the garage. A local group installed all that for free. Primary Progressive MS (PPMS) only has one drug approved to slow progression (Ocrevus). I am not on that drug, but am treating symptoms with various meds. I use a cane and occasionally a Walker. Only use a wheelchair if I have to go a long way.  Overwhelming fatigue (I often feel like a bowl of oatmeal that someone is trying to take for a walk), temperature sensitivity, myoclonic jerking, and brain fog are among my symptoms. Generally speaking, I can do one thing a day; sometimes that one thing is a shower; other times it is a meeting or social occasion. I've stopped homeschooling and put our teen in the local high school, where he is, thankfully, thriving. But I must stress that this is PPMS, which it doesn't sound like your DH has.

Re the Wahls Protocol - it is not viewed favorably in the MS patient/neurologist community. Sort of like the vaccine/autism issue. 

My best to you and your DH. And please do contact your local MS Society for support. 

I am so so sorry you are dealing with this.

 

[Pen]

I’ve had huge help from “clean living,” stress reduction, and autoimmunity nutrition protocols, including entirely gf and mostly cf and processed food free. Plus vitamins, minerals, supplements. Before that I was going steadily (not steadily - ups and downs and plateaus , but more downs actually) downhill.   I have an MS / lupus overlap condition  - possibly following an infection as with Lyme type illness 

The Autoimmune Fix: How to Stop the Hidden Autoimmune Damage That Keeps You Sick, Fat, and Tired Before It Turns Into Disease https://www.amazon.com/dp/162336700X/ref=cm_sw_r_cp_api_i_Oa0PDbDB7D7MW

I have bathroom grab bars, trekking poles, and sometimes service dog help for balance. My neuropathy is better now than it used to be. 

Edited October 16, 2019 by Pen

[Soror]

I'm so sorry 😞 I hope these ladies are able to offer some help and information for you.

[PrincessMommy]

No advice, but I wanted to say I'm sorry.  What a shock.   hugs

[May]

I’m so sorry🌺Best wishes as you navigate the days ahead😊

[Bambam]

Did you ask the doctor about any medical trials for MS that he might be eligible to participate in - that is, if you are willing to venture into that territory. 
I'm sure you've already researched the variety of treatment options - https://www.nationalmssociety.org/Treating-MS/Medications

 

[SereneHome]

15 minutes ago, Bambam said:

Did you ask the doctor about any medical trials for MS that he might be eligible to participate in - that is, if you are willing to venture into that territory. 
I'm sure you've already researched the variety of treatment options - https://www.nationalmssociety.org/Treating-MS/Medications

 

No, I don't think he asked that. Thanks for giving us an idea

[ktgrok]

A friend (Dh's ex girlfriend actually) has it, has since her early thirties I believe. She finds diet very helpful (paleo ish) and says that the biggest thing to exacerbate her symptoms is heat. Lack of appetite is one of her symptoms though, so she has to push herself to get nutrition in, and to drink enough. 

She does the expensive meds, and has had a heck of a time battling insurance companies over them, but won. She is also trying to save up and figure out logistics to do autonomous stem cell transplant (I think it is autonomous, maybe not) but there are only a few places doing that in the world, and she has young kids and her husband has mental health issues so logistical and financially not sure how to make that work - it involves living on site for quite a while I believe. And has real dangers - but offers a possible cure or as close to it as we have. 

[SereneHome]

3 minutes ago, Ktgrok said:

A friend (Dh's ex girlfriend actually) has it, has since her early thirties I believe. She finds diet very helpful (paleo ish) and says that the biggest thing to exacerbate her symptoms is heat. Lack of appetite is one of her symptoms though, so she has to push herself to get nutrition in, and to drink enough. 

She does the expensive meds, and has had a heck of a time battling insurance companies over them, but won. She is also trying to save up and figure out logistics to do autonomous stem cell transplant (I think it is autonomous, maybe not) but there are only a few places doing that in the world, and she has young kids and her husband has mental health issues so logistical and financially not sure how to make that work - it involves living on site for quite a while I believe. And has real dangers - but offers a possible cure or as close to it as we have. 

wow, DH's neuro said there is no cure and she doesn't anticipate it in her lifetime!

[Melissa in Australia]

Huge hugs

[SereneHome]

thanks everyone, we sure do have a lot to process....

[Pen]

5 hours ago, Ktgrok said:

A friend (Dh's ex girlfriend actually) has it, has since her early thirties I believe. She finds diet very helpful (paleo ish) and says that the biggest thing to exacerbate her symptoms is heat.

 

Yes heat is a problem. Some people have special cooling devices 

vitamin D is also relevant 

formaldehyde can also exacerbate as can emotional stress or physical stress like a virus

 

[Guest]

I have no knowledge about MS, but I just wanted to say I’m sorry and I hope you get good answers for mitigating the symptoms and progression. 

[PeterPan]

I’ve been reading about studies with stem cells so it could be something to ask about. 

[sassenach]

15 hours ago, SereneHome said:

thanks everyone, we sure do have a lot to process....

Take it slow and steady. Don't feel like you need to change diet, supplements, lifestyle, etc all at once. ((((HUGS))))

[BeachGal]

There have been a few studies done that show fasting and a specific fasting-mimicking diet can help with symptoms. Valter Longo at USC and Laura Piccio at WUSTL as well as some other universities here in the US and throughout the world are doing these (small human studies). A big study is being talked about at WUSTL. I’m not sure if it has started yet but you can call or email Dr. Piccio for more info. Not everyone is helped but some are.

The senolytic drugs are now being used in human studies for diseases once thought untreatable. Might be worth watching to see if there are any MS studies using these.

UWisconsin at Madison recently did a human study using red light therapy — a type of photobiomodulation — to help with fatigue.

The microbiome appears to play a role. There might be some clinical studies.

If you want to learn more, researcher Rhonda Patrick interviewed Valter Longo where he talks about fasting and MS among other things. Rhonda also interviewed Judith Campisi who discusses the senolytic drugs.

I hope your husband can find something that helps. ((()))

[BlsdMama]

On 10/16/2019 at 10:01 AM, SereneHome said:

We both are still in shock....

But I would really like to hear the good, the bad and the ugly that anyone wants to share. I know meds are going to be VERY expensive. So of course I am worried about that. I can't even imagine how our lives might change. I am trying to see if there is anything else besides the meds that can be helpful.

I cannot emphasize enough to research and understand the Wahl Protocol and the why behind it.
I know someone (Primary Progressive) who is seeing results from consistent adherence.

[waa510]

On 10/16/2019 at 11:34 AM, Ranger said:

Terry Wahls is a doctor with MS who shares her story in The Wahls Protocol and I think it is very helpful. 

 

I'm not trying to start anything, however Wahls fails to mention that she also had a chemo treatment done (as well as a change in diet). Just wanting to be sure all have all the info.

My recommendations: find an *MS specialist* neuro to see in your area. In general, regular neuros just don't seem to be well-informed on MS. Treatments update rapidly and having someone who is on the up-and-up on research and medication developments, hospital and steroid treatments, etc. is so helpful.  

Ask his doctor about getting him on (a whole lot of) Vitamin D. 

Gently, please be patient with him as he processes this diagnosis. It is not an easy pill to swallow. In the early days, it was very challenging for me to have everyone expect me to be 100% emotionally OK just weeks after leaving the hospital, while still re-learning how to walk  and eventually drive again. He may take his anger at the situation out on you. He may feel as though he's lost some control over his life and his health, at least right now. I could go on, but yea...these are the most important things to keep in mind, I think. 

[SereneHome]

1 hour ago, waa510 said:

 

I'm not trying to start anything, however Wahls fails to mention that she also had a chemo treatment done (as well as a change in diet). Just wanting to be sure all have all the info.

My recommendations: find an *MS specialist* neuro to see in your area. In general, regular neuros just don't seem to be well-informed on MS. Treatments update rapidly and having someone who is on the up-and-up on research and medication developments, hospital and steroid treatments, etc. is so helpful.  

Ask his doctor about getting him on (a whole lot of) Vitamin D. 

Gently, please be patient with him as he processes this diagnosis. It is not an easy pill to swallow. In the early days, it was very challenging for me to have everyone expect me to be 100% emotionally OK just weeks after leaving the hospital, while still re-learning how to walk  and eventually drive again. He may take his anger at the situation out on you. He may feel as though he's lost some control over his life and his health, at least right now. I could go on, but yea...these are the most important things to keep in mind, I think. 

I get it and welcome your perspective.  Please feel free to share or add anything else!!

[AngieW in Texas]

Was he also tested for MOG? Some people who were diagnosed with MS years ago have had their diagnosis changed to MOG antibody disease since the test first came out a few years ago. It is also a demyelinating disease. My 24yo was just diagnosed with MOG antibody disease this summer.

The major reason this is important is because some MS treatments make MOG much worse.

https://myelitis.org/wp-content/uploads/2018/08/2018_MOG_F.pdf

Edited October 19, 2019 by AngieW in Texas

[Spy Car]

Many years ago I worked on an alternate health television show. One of the profiles we did was on Ann Sawyer who is the co-author of a book  called The MS Recovery Diet. Sawyer, a nurse and a person with MS, refined earlier diet-based approaches that appeared to reduce the symptoms of MS.

Her approach is built around eliminating "trigger foods" that set up a cascade of myelin damaging responses in the body. She explains the science in the book.

She in no way proposes this diet as a "cure" for MS, or as a replacement for medical treatments, but it seems to help people mitigate the symptoms of MS. Worth checking out in my non-expert opinion.

https://www.amazon.com/MS-Recovery-Diet-Identify-Disease/dp/158333288X#customerReviews

Bill

 

 

 

Edited October 19, 2019 by Spy Car

[SereneHome]

8 hours ago, AngieW in Texas said:

Was he also tested for MOG? Some people who were diagnosed with MS years ago have had their diagnosis changed to MOG antibody disease since the test first came out a few years ago. It is also a demyelinating disease. My 24yo was just diagnosed with MOG antibody disease this summer.

The major reason this is important is because some MS treatments make MOG much worse.

https://myelitis.org/wp-content/uploads/2018/08/2018_MOG_F.pdf

 

He had an MRI and neurologist found lesions and send him to MS Neurologist.....

[SereneHome]

I appreciate your post @Patty Joanna , thank you

 

[Spy Car]

4 hours ago, Patty Joanna said:

"Alaska" found stalling of the progression of the disease and then actual improvement following the Wahls diet.

I was curious about the Wahls diet due to your post and found a strong overlap between its elimination foods and those of the MS Recovery diet.

Bill

[SereneHome]

@Patty Joanna - this is interesting about "Alaska" bc from what I've been reading lack of Vit D makes a difference with MS, so do you know if she is on large doses due to where she lives?

[Pen]

I would strongly urge reading the books that relate to autoimmunity/ms help from dietary and similar lifestyle changes mentioned by several of us here:

https://www.amazon.com/Autoimmune-Fix-Hidden-Damage-Disease/dp/162336700X  is the one I basically follow (includes 7 common food triggers to avoid) 

 

https://www.amazon.com/MS-Recovery-Diet-Identify-Disease/dp/158333288X Is the one Bill Spycar mentioned - it has 5 main food triggers mentioned?—and I think it has some overlap with the 7 in Autoimmune Fix, but some don’t overlap, and I think I have to avoid all 7 from AF plus 2 mentioned in this book  (legumes and yeast) in addition to the 7 

And the  Wahls Protocol and perhaps other similar ones you / he can find. 

 

I have found all of keto, paleo, and whole, real non processed foods helpful.

I have found a number of supplements helpful.

 

The filmed conference on Cancer someone posted about has lots of overlap with things some people have found to help with autoimmunity.  

I posted a link to a free telesummit on autoimmunity a while back.  It’s no longer on, but might be worth purchase of the materials now for someone starting on this journey

 

 

[SereneHome]

2 hours ago, Patty Joanna said:

 

I would bet on it but I don't know for sure.  She's the one I would expect to do everything dietary.  🙂

Thanks

I am making the list of LOTS of questions for his neurologist - he is seeing her in January.

[Pen]

In re vitamin D, there’s association of MS with climate one grew up in (maybe even more than adult climate).  I have felt best in PNW summer when it’s plenty sunny, but not too hot.  I find I personally need at least 4000IU D3 /day (sometimes more) in non sunny weather (or if I’m indoors) .  

Real sun seems to help more, but there’s the flip side that heat (and I think also high humidity) going with sun often makes it worse.  

Full spectrum lighting also seems to me to help. 

[Pen]

IME,  Be careful about balance, (and not to add to disability by getting injured from falls) especially proprioception.  

If eyes or shut or in darkness or if trying to move quickly balance can be affected greatly IME. I had several falls before I figured out what was going on.

Im currently doing fairly well following my nutrition plus supplement protocol, plus summer With natural sunlight has been recent and does help.  But if I try to walk in darkness I still have very poor balance—or also if I shut my eyes in shower etc (I do have shower grab bar). 

Another huge area can be toxins, whether that’s mold exposure or formaldehyde or many other types. 

[BeachGal]

Another idea to research is Nicotinamide Adenine Dinucleotide (NAD).

 

[SereneHome]

2 hours ago, Pen said:

IME,  Be careful about balance, (and not to add to disability by getting injured from falls) especially proprioception.  

If eyes or shut or in darkness or if trying to move quickly balance can be affected greatly IME. I had several falls before I figured out what was going on.

Im currently doing fairly well following my nutrition plus supplement protocol, plus summer With natural sunlight has been recent and does help.  But if I try to walk in darkness I still have very poor balance—or also if I shut my eyes in shower etc (I do have shower grab bar). 

Another huge area can be toxins, whether that’s mold exposure or formaldehyde or many other types. 

But whatever it was, it's non-reversable, right?

[SereneHome]

Also wanted to update - looks like meds are going to be affordable (for now) so that's a huge thing, of course.

But I am trying to research and figure out what else he / we can do, so I can not tell you how much I appreciate idea, suggestions and stories.

[Pen]

1 hour ago, SereneHome said:

But whatever it was, it's non-reversable, right?

 

I’m not sure how to answer that.

It is substantially reversible as to symptoms and problems.  At least in some cases.

The tendency toward it remains — so a return to same lifestyle etc as one had before hand isn’t possible.  I was in a wheelchair for a while at my worst and haven’t been for ? Over 20 years now.    So certainly reversible in that regard.  I went almost entirely the “alternative” route because people I knew or met on “conventional” seemed to do badly. 

I had several things near each other in time including a malignant melanoma (the bad type skin cancer), the autoimmune condition, and probably Lyme disease....      I presume due to a combination of environmental exposures, and emotional and physical stressors at the time.

“Reversibility” means what to you?

 

Edited October 20, 2019 by Pen

[SereneHome]

1 hour ago, Pen said:

 

I’m not sure how to answer that.

It is substantially reversible as to symptoms and problems.  At least in some cases.

The tendency toward it remains — so a return to same lifestyle etc as one had before hand isn’t possible.  I was in a wheelchair for a while at my worst and haven’t been for ? Over 20 years now.    So certainly reversible in that regard.  I went almost entirely the “alternative” route because people I knew or met on “conventional” seemed to do badly. 

I had several things near each other in time including a malignant melanoma (the bad type skin cancer), the autoimmune condition, and probably Lyme disease....      I presume due to a combination of environmental exposures, and emotional and physical stressors at the time.

“Reversibility” means what to you?

 

To me what you describe is reversible. Not sure how DH will feel about it. He just wants "his old life back" without his symptom and without the diagnosis....

I know he won't agree to "no meds", but I am hoping to do the combo of both - conventional and alternative. I just don't know what to "pick" for alternative bc there seem to be a bit of contradictory stuff as far as diets are concern

[Pen]

33 minutes ago, SereneHome said:

To me what you describe is reversible. Not sure how DH will feel about it. He just wants "his old life back" without his symptom and without the diagnosis....

I know he won't agree to "no meds", but I am hoping to do the combo of both - conventional and alternative. I just don't know what to "pick" for alternative bc there seem to be a bit of contradictory stuff as far as diets are concern

 

I think combo idea is a reasonable approach.  Meds (and they may be better now than when I started the journey) could help control symptoms while other approaches simultaneously may help strengthen and repair myelin sheath and normalize the immune system.  As well as to help avoid things both from foods and surroundings that may cause immune system to attack own cells. 

One thing I liked about the film Betrayal docuseries  was seeing a bunch of different approaches discussed, one after the other and realizing that there is Not a one size fits all answer.   For example,  One person may do really well becoming vegan , while another does really well giving up being vegan and eating meats and fats. 

Large numbers (and I am one) of people with autoimmunity  have been helped by going 100% (not 99.9%, 100%) gluten free—but for me and many others, just gluten free alone isn’t enough , I have to avoid other trigger foods too.  

The best days imo were around the middle of the 7 day series, but this might link to Episode 1?

https://betrayal.mykajabi.com/episode-1-of-betrayal

 

[Spy Car]

1 hour ago, SereneHome said:

To me what you describe is reversible. Not sure how DH will feel about it. He just wants "his old life back" without his symptom and without the diagnosis....

I know he won't agree to "no meds", but I am hoping to do the combo of both - conventional and alternative. I just don't know what to "pick" for alternative bc there seem to be a bit of contradictory stuff as far as diets are concern

A quick web search says this:

The Wahls diet suggests you skip foods that could cause cell harm such as sugar, processed foods, grains, soy, dairy, eggs, and legumes, while embracing veggies, grass-fed meat, fish, fruit, and plenty of healthy fats.

The MA Recovery diets says:The MS Recovery diet avoids five common trigger foods that can set off the symptoms of MS--dairy, grains containing gluten, legumes, eggs and yeast. A very strong overlap with Wahl's. And IMS The MS Recovery diet classes "soy" under legumes as a common trigger food.

Despite it having been a decade since I've read Sawyer's book, I also recall the emphasis on identifying "individual trigger foods" that might affect some individuals and not others. For example, I belive Sawyer's daughter (who also developed MS) had lobster as a trigger food.

The first section of the MS Recovery diet book is very informative on the science of diagnosing MS and on the diet hypothesis. Even if one chose not to follow the dietary suggestions there is a lot of useful information for people new to MS. The idea here is to limit the expression of symptoms by preserving myelin.

I'm no expert on MS and a person who is very skeptical of "woo." I would listen to physicians who are experts in the field. But when I dug into this complementary approach while making the television show, I was impressed by the number of people helped  as an augment to medical treatments, by Sawyer's reasoning for how reducing inflammatory responses in the body can slow the destruction of myelin, the integrity of her character that came through in the raw footage, and that there is no money-making in her approach--in fact before the book she used to hand out similar information in packets for free and she encourages people to share her ideas freely. No "secret" formulas here. Nothing to purchase.

If anyone dear to be had MS I would recommend the book to them for them to evaluate for themselves.

Best wishes to you and your husband.

Bill

 

 

 

 

Edited October 21, 2019 by Spy Car

[Pen]

There are multiple aspects to nutritional supports for autoimmunity.  Some have to do with avoiding substances like formaldehyde and gluten and wheat germ agglutinin which commonly provoke autoimmune attacks .  

 

 

 

 

Other aspects , particularly with regard specifically to ms , include helping to fix damaged myelin ...  (other types of autoimmunity would need support for other tissues that need regeneration, but for me it’s especially myelin) 

 

 

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