friend with MS… interesting parallels

[Regenallotment]

hi just sharing as this intrigued me. Visited a friend I haven’t seen for 12 years recently, she moved away. She was diagnosed with MS just before she left and talking to her I learned the following.

MS support group recommended loading dose of 40,000 iu Vit D then 8,000 a day more in winter. This had a transformational impact on my friend and she saw results within 3 days with no adverse effects.

MS recommend an anti inflammatory diet very similar, gluten dairy and sulphites free, but also coconut free (inflammatory apparently) the coconut but was new to me but Bertwills it made me think of you.

Hyperbaric oxygen treatment weekly really helps. Initially 3 weeks daily to get accustomed, she was convinced this would help me.

My friend has managed to have her MS in a non progressive state for 12 years (MRI proven), fix the chronic fatigue and dizziness. Maintain an active life walking dogs and grandchildren. With zero medication.

Amazing huh 🤔

🌱

[Bertwills]

That’s all interesting. Glad to know about the coconut. Easy to try the Vitamin D too. Thank you

[janeroar]

Interesting! I can see that the things she’s doing will help folks with autoimmune issues.

However to the best of my knowledge coconut is anti inflammatory

pubmed.ncbi.nlm.nih.gov/206...

Its also widely recommended as an alternative to seed oils for cooking.

I’m not sure it would be wise to take a loading dose of vitamin D without a blood test that indicates deficiency as it can be toxic at high levels. That is unless there’s evidence that despite this it can be good for folks with chronic conditions like Hashis or MS?

[Sparklingsunshine in reply to janeroar]

I believe vitamin D can play a preventative role with regard to autoimmune disease, MS is certainly linked with historically low vitamin D levels as a risk factor.

But what role it plays once an AI disease has been established is open to debate. I remember vitamin D was touted as a risk factor for severe covid infections during the pandemic, but its the whole causation vs correlation argument.

[Regenallotment Ambassador in reply to janeroar]

Yup she won’t touch coconut now. Interesting to learn different points of view.

[J972]

Extremely interesting. Does your friend have the ‘relapsing and remitting’ diagnosis, rather than ‘progressing’?

I recently underwent a course of oxygen therapy sessions at a nearby charity-run hyperbaric chamber. It’s actually called The MS Therapy Centre and, as I understood it, most people attending have that diagnosis. Some others were undergoing cancer treatment or were told they had ME/CFS.

Speaking to some of them about the efficacy of the treatment it was evident that, whilst they couldn’t say with any certainty that it *definitely* helped, they all said that it was *probably* helping to slow the progression of their condition. None of them were willing to take the risk and stop.

One lady I bumped into turned out to be a former colleague and she explained that she once missed a week and spent 48 hours straight in bed (long term ME/CFS diagnosis). Anecdotal evidence but interesting nonetheless.

It’s an intriguing experience, that’s for sure! If you have access to a chamber nearby and the price is reasonable then I’d say you have very little to lose. The place I went to was £18 for a full hour, which I understand is very cheap compared to elsewhere. The reported side effects are minimal - I experienced pretty bad ear pain during the first session but that was entirely my fault for not properly following the advice of the volunteers about how to combat that. I’d definitely do it again if the timings allowed (it was a rush to get back for work).

[Sparklingsunshine in reply to J972]

I approached them about oxygen therapy for Fibro, I saw another post on the Fibro forum and was intrigued, we were discussing alternative therapies, rather than conventional painkillers. This lady swore by it.

I did approach the MS centre and they do treat other conditions than MS, but its £40 per treatment and that plus travelling costs as the nearest centre is 20 miles from me, meant its out of my price range.

[arTistapple]

Yes I have been watching a friend who was confirmed MS over twenty years ago. It’s twenty years since I met her and she was already diagnosed. NOT ‘relapsing and remitting’. She was in a wheelchair the first day I met her. The story about ‘progressing’ that does the rounds is that once MS sufferers take to a wheelchair, it’s considered permanent. Honestly I see no difference in her over the twenty years. Frankly I have always seen huge similarities in our symptoms. She only uses the wheelchair occasionally. She does the hyperbaric chamber thing every week and she has commented that she is the ‘last survivor’ of the original group of MS sufferers.

I have another friend who was diagnosed maybe fifteen years ago. She is totally bedbound now. Makes me wonder just a bit about their thyroid status. They seem to suffer similar Co-morbidities to us hypos.

Wondering too if J972 lives in the same are as one of these friends. Ref: to The MS Therapy Centre. I don’t know how many of these are about. I too have wondered about having a session to see if it would make any difference to my muscle stuff.

[J972 in reply to arTistapple]

I agree, there’s obvious parallels. I’ve also noticed similarities between MS and B12 deficiency/PA.

A dear friend was diagnosed with MS a couple of years ago after waking up to find one side of her body completely numb. This followed a previous episode of weird foot numbness a couple of years prior to that. She’s otherwise living a full and active life, running, playing hockey and bringing up 2 youngsters. She has a professional job too.

We’re catching up in a couple of weeks and I’ll be sure to ask her about any special protocols that she might be following.

I’ve PM’d you about the hyperbaric chamber location, I wasn’t sure if we’re allowed to mention such things on the forum. 😊

[bookish in reply to J972]

Sadly MS is quite commonly a misdiagnosis of a B12 D or PA - happened to a friend's mum - not the only misdiagnosis of B12D of course, which is all too easy to misinterpret or miss altogether! As both affect myelin, it would make sense to at least ensure that B12 and B9 are optimal, check homocysteine and add B6 if needed.

This is interesting - even though the 'healthy' homocysteine level quoted - normal range < 13.9 - is still high by some standards (7 or less perhaps being given as optimal, 10 or more needing treatment)

ncbi.nlm.nih.gov/pmc/articl...

PS also under discussion on MS forum healthunlocked.com/mymsaa/p...

[Sparklingsunshine]

I swear by LDN for Fibro, which shares many similarities with MS.

[Sparklingsunshine]

Its just a shame that its not available on NHS, its very cheap and has far fewer side effects. It doesnt work for everyone, but name me a drug that does?

Its always worth giving LDN a try because you might be someone for whom it helps. Pregablin, one of the approved NHS treatments for Fibro, works really well for about 10% of people who use it. Not exactly a glowing endorsement. It also has some pretty awful side effects.

[WitchingHour2point0]

Having read this, I've realised that I love about this forum is that we seem to be a curious bunch willing to try most things to see if it helps.

I have a few friends with autoimmune diseases who are content to do nothing other than 'take their meds'. I find it hard to relate to because it doesn't make sense to me.

Thanks for posting Regen!

[Regenallotment Ambassador in reply to WitchingHour2point0]

🤗 love this thread 🙏 fills my heart with hope. Sometimes just a tiny mention of something new has a snowball effect and gets us thinking doesn’t it xx

[Sparklingsunshine in reply to WitchingHour2point0]

In my case I've tried the meds and they didnt work. I've always been a bit anti med I suppose but thats because I know its just treating the symptoms and not the cause.

I'm unfortunately very medication sensitive which has probably coloured my outlook as I've had some very unpleasant experiences including anaphylaxis. Its made me more determined to avoid things like painkillers and antidepressants though. Which are first line drugs for Fibro, which I have.

I'd always rather try other remedies besides medication first. At least that way you've tried and the medication will still be there if you want it. Eating healthily, exercise, relaxation, good sleep and reducing stress can go along way in helping us feel better.

[Tugun]

Thank you for the info.😊

[bluejourney]

I think the oxygen question is interesting. I’m sure, being hypo that I’m low on oxygen. I often feel I’m not breathing enough. I’ve seen advertised a portable machine you can use at home called Airnergy Spirovital, that’s supposed to produce ‘energised air’, and help various conditions. I’d be interested to know if anyone on the forum has used it.

[Espeegee in reply to bluejourney]

Why not have a look around for a HBOT near you and give it a try, it's not that expensive, I think I paid £40 for an hour. I'm not sure if there were any results or not, I suspect you need a couple of sessions at least and I never got back there, mostly because it's a good half hour each way. I've not heard of the machine and I am always a bit suspicious, you could maybe see if there are any Trustpilot reviews for it although that's not always 100% authentic.

I tried Trust pilot, nothing came up. Web search produced a link that the browser wouldn't open, then this - oxygen-energy-therapy.com/ very glossy web page, I'll leave you to explore lol.

[Espeegee]

Wonderfully positive, how lovely for her. Natural help over pharma anyday but I appreciate that's not always possible for some.