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SereneHome

So my DH was diagnosed with MS....

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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.

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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. ♥️

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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 by itsheresomewhere
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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.

 

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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!  ❤️

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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. 

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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.

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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.

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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 by SereneHome

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

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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. 

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29 minutes ago, Ranger said:

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

My SIL was diagnosed about three years ago and had been following the Wahls protocol.  Between that and finding a medication that is working well for her she has no new lesions and has been doing very well, all things considered.

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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.

 

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

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

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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

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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. 

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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!

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I'm sorry...what a shock for you both!

MS is a serious disease, but because you want to know the good too, the people I know who are living with relapsing-remitting MS, and have been for a long time (decade +), are doing well.

Of course there are adjustments, and I'm sorry to hear that cost of medicines will be a stressor, but the people I know are still working, travelling, parenting. So there is realistic hope of living well with MS. 

Adapting to a chronic and sometimes progressive illness is tough though. Best wishes as you navigate the diagnosis.

Edited by StellaM
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One of my friends found a vegan diet helpful, btw. I'm not suggesting that as anything more than an anecdote; it could be that going vegan co-incided with remission, who knows ? Can it cause a decrease in symptoms ? I have no idea. But yes, anecdotally, sometimes people find dietary changes helpful in one way or another.

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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

 

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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. 

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

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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))))

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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. ((()))

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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.

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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. 

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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!!

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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 by AngieW in Texas
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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 by Spy Car
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I have three friends--close friends--who have MS.  Two (sisters) were diagnosed in their early 40s, 20 years ago, and have had very small but noticeable (mostly to themselves) progression of the disease; one was diagnosed later in life, 5 years ago, and hers has progressed faster.  

All of them notice big differences in seasonal change, and especially in the transition from warm to cold.  Two of them can do something about it and they do; they get to a warm and sunny climate for at least a month at the darkest time of the year.  The one can't--and she lives in Alaska.

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

One of the sisters took the injectable med (I can't remember the name of it now) but quit after a number of years.  She can afford it, but was worn out (and so was her flesh) by the daily shots.  She and her sister are both very active, and were in very good shape when they got the news.  They still are quite active, and while they feel like the disease is slowing them down, you couldn't tell it by the rest of us mortals--they started off well.  Both of them have found that diet makes a difference for them...they don't do Wahls (it helped but they were not bad enough off to do the work--but they learned something from it). One of them has to eat a LOT of protein....and I don't know about the other.

The sister who did the meds now is on an energy-enhancing herb; she takes it three weeks and then takes a week off--and she notices a big difference in herself when she is off of it.  So she plans her life to be a little slower in that week that she knows is coming...and frankly, *I* can't tell any difference, from the outside looking in.  

The sisters have far less daily stress in their lives than does Alaska...and they have had good and attentive healthcare, and I think both of those a difference.  They have had some terrible events, but not the stress of wondering if they can eat tomorrow or wayward children, like Alaska does.  I mention it because it is a difference in their lives.

None of the 3 gets the "annual MRI" anymore.  It's a hassle, it does NOTHING to help the doctors diagnose or cure (in their cases--I don't know about "in general"), and they know from their bodies when they are relapsing...so why spend the money and have all the aggravation?  If the medical community wants the results for research purposes, let the researchers pay for it.  

I just remembered--there is another woman I know who has it.   She was morbidly obese when she found out, and while she has lost more than 200 pounds, she is still a bit overweight and has very little muscle tone.  She has gone downhill faster than the others.  She is the same age as one of the sisters, and you would be more likely to guess a mother-daughter age difference between them.  She has had a LOT of daily stresses in her life (how will I pay the rent) and her exacerbations cause her more stress...  I don't know whether she follows a specific diet, but my guess would be, no.  She is *finally* getting some specialist care, but it took a bunch of prodding from many of us to get her going on that.  I know enough of her history to know that she has had a life that no one would wish for anyone, but she has done as best as she can to "make the lemonade"--it's just that it is a LOT of lemonade.  Same with Alaska.  

I know I sound matter of fact and probably a little cold here.  I mean to.  These are just the facts about what I know for these 4 women.  That said, here is my emotional response:  I have been so impressed with how they have all played the hand they have been dealt...even the last one, who is a little bit goofy, to tell the truth.  They've met it and adjusted and to the extent that they want to do battle, they have done battle.  They've tried things, they've called the situation as they see it, they've said NO to treatments that don't help and tried things that might--some of which have, and some of which haven't.  They have all prayed.  They've kept their hopes up but in a way that faces reality with grace.  They are all amazing people...more cheerful than half the people I met in the grocery store today.  :0)  

All the best to you and your dh as you walk this path.  One of the things my friend said to me is that this is a path she walks alone--it is her disease to suffer.  She acknowledged that having the rest of us around makes the journey much better--but it was important to her to "own" it.  I didn't understand that, but it was important enough to her that I did try to do so.  I kind of get it, now...it IS her suffering, but when we come alongside, the journey is not as lonely.  

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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.....

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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

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@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?

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1 hour ago, SereneHome said:

@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?

 

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

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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

 

 

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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.

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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. 

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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. 

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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?

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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.

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