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It is a couple of years at least since I last posted about this. My hair loss has not improved, and I've lost all of it above my forehead and a lot at the sides and top. It has become a big embarrassment and I've been to see a hairdresser about a hairpiece to cover those areas. If I was male, I think I'd be more accepting - in the great scheme of things, it doesn't seem such an issue. But somehow it is for a female.

My hair started dropping out quickly within weeks of starting OMS, nearly five years ago. I have been told by a specialist that it must have been caused by the shock of change of diet (I stopped meat, dairy and sat fat overnight, having decided that if I 'cheated' even once, I would slide back into old habits). I don't take any MS drugs, and never have done.

There's no way I'd go back; I can't emphasis that enough. Due to OMS I have not had any relapses, and am no worse than I was five years ago. I really enjoy the OMS diet. The hair loss is the one negative. I wish now that I'd gradually, rather than suddenly, cut down on all the above - but far too late to change that now.

Has anyone else experienced hair loss that did not improve over the years?

Thanks for reading this.
Diagnosed 2013.
Hi Sunlight

Sorry to hear you are experiencing this - it must be distressing.

I think my hair loss has increased since starting OMS, but as I have also been on Copaxone, I can't guarantee that it is entirely to do with the diet. I am fortunate in that I am blessed with thick hair, so I only really notice the loss in that the amount I 'moult' in the shower seems to have increased.

Diet-wise, having done a quick Google, it would seem that lack of protein could contribute to hair loss. Perhaps see if your diet includes enough? Are you a fish eater, or is your diet strictly vegan?

Sorry not to be able to offer more help.


Rachel
Thanks for your reply, Rachel.

Yes, I too had very thick hair, and it's still thick in places. Which makes the balding places stand out even more!

Thank you for your suggestion about protein. I am a fish-eater, and also eat plenty of beans and nuts. But I might try upping the amount even more. I've had extensive blood tests to see what's missing (zinc was one theory, as was iron and a few other things), but everything came back normal.

I assume no-one else has had this problem, as there are not more replies. It appeared from posts some years ago that people found any hair loss was temporary, and it grew back again. It must be the same for people now. Oh well, back I go to clearing the blocked shower once a month...
Diagnosed 2013.
First of all, sorry to hear that you're experiencing this, Sunlight.
The last time I suffered hair loss it turned out I was anaemic, but you've already said that your iron is normal.
Take a look at this:
http://www.nhs.uk/Conditions/Hair-loss/ ... auses.aspx
Interesting that it can be caused by problem with immune system. I've never heard of it as a problem with MS but reading the info does make it seem possible as it can be an autoimmune thing which MS is also. Also it mentions stress. Do you think that could be a factor?
I must not fear. Fear is the mind-killer ― Frank Herbert, Dune
2014 - diagnosed
Thank you, Irulan. Because of your link, I went to the nhs website and from there found a link to Alopecia UK, which I found has a support group not far from me. So I shall go to that, and double thank you to you!

I've been less stressed in the last few years than I ever have been. My hair loss started very suddenly and dramatically some weeks after I started OMS. Last year I saw a trichologist who arranged all the blood tests, and she's the one who suggested it must be the body's shock reaction to suddenly changing my diet. Cutting out fat, perhaps? Or dairy? She was totally flummoxed by me, and that was her only suggestion.

So it's not MS itself, but the diet I've chosen. And which I can't change, because stopping it might mean worse MS symptoms, which is worse than alopecia!
Diagnosed 2013.
Dear Sunlight,

I am really sorry to learn that you are having such a distressing experience with hairloss. It is not as if MS is not bad enough already, without this additional demoralising symptom to cope with.

While quite a few people on the forum report hair loss, I really, really do not believe that it is something you have to accept. I had an experience of copious hair-loss myself but am no longer having to de-bung the shower drain at regular intervals. The same can be true for you.

Two things about the OMS diet might conceivably be making your hairloss worse. One relates to the flaxseed oil and the other to the egg-white only regime. Clarification below.

1) Nutrition for hair growth
I found the article below very helpful. It’s quite long but - at the very least - you might like to skip down to the section on the 10 ten food that are the foundation of healthy hair growth.

Their No. 1 recommendation for healthy hair growth is fish oil from salmon or mackerel, which provides Omga 3 in the form of body-ready EPA and DHA (respectively eicosapentaenoic acid and docosahexaenoic acid).

On OMS we are advised to take flaxseed oil as our source of Omega 3 but the form of Omega 3 that’s in flaxseed oil is ALA (alpha-linolenic acid). To get the good stuff out of flaxseed oil our bodies have to do quite a big conversion job to transform the ALA into EPA and DHA. How successful the body is at converting the ALA depends on lots of factors but the average conversion rate is only about 10-15%.

If you want to read more about this, type in something like ‘flaxseed oil versus fish oil’ into your search engine.

Faced with hair-loss, my first strategy would be to start taking fish oil instead of, or as well as, the flax oil. I’m in the UK like you and currently buy the Aava Labs fish oil via Amazon.

2) Biotin / Vitamin B7
If you have joined an alopecia support group, you will doubtless have come across vitamin B7 or biotin. In Germany it is known as Vitamin H because of its crucial role for hair and skin. You can obviously get vitamin B7 through your diet but two factors may contribute to you being deficient:
a) many - if not all of us - with MS have so-called leaky gut and gastro-intestinal issues that lead to nutrients being poorly absorbed and
b) eating egg whites (rather than the whole egg) can serve to deplete your body of biotin/B7.

In your situation I would start taking biotin immediately. Just taking the 10,000 mug tablets that are available online will almost certainly be a complete waste of time given the seriousness of your hair loss. What you need to do is to take proper therapeutic quantities for at least 6-12 months. Basically emulate the ongoing trials into treating progressive MS with high-dose biotin.

Have a look at the following post:

viewtopic.php?f=6&t=7396&p=46067&hilit=High+dose+biotin#

3) Hormones
A hormonal imbalance was the cause of my own hair-loss. I spent 9 months trying combine OMS with a Keto diet after reading an article by Storroni et al. arguing that a Keto diet might be an effective treatment for progressive MS. The two diets are basically incompatible and I ended up giving myself a thyroid imbalance. Once I went back to a sensible carbohydrate intake, my hair stopped falling out.

Hormonal issues can be a big factor in hair growth issues. A really good site about all things hormonal is https://hormonesbalance.com/

Well worth while having a look through the articles, and perhaps typing ‘hair loss’ into the search box.

4) The gut microbiome
We can eat the best organic diet in the world and take the finest supplements but if the trillions of organisms that make up our gut microbiome are not happy, we are not going to benefit properly from all the good things we are eating.

Time and energy invested in learning about your gut microbiome and how to optimise its health will be amply rewarded.

Hope some of these ideas might prove helpful. Good luck!

Jette
The Gut Microbiome is KEY to optimal health.
The OMS site & forum are brilliant! Thanks, everyone! :D
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