37 Comments
Nov 25, 2022Liked by Gavin Giovannoni

May. 1957. Blackburn. Pre smokeless zones. Mum worked in factories. Doomed ;-}

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Nov 25, 2022Liked by Gavin Giovannoni

I was born on my due date— October 3, 1998 in Colorado, USA but my mama grew up all over the world from Mexico, Italy to the US. I grew up between the US (Virginia and Colorado) and then Italy (Abruzzo and Emilia Romagna).

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Nov 25, 2022Liked by Gavin Giovannoni

I’ve always wondered about this. I was born in May 1973 in Scotland. I grew up in a flat with no garden and my dad was a chain smoker.

What chance did I have?

Although my sister is fine.

I also have red hair and pale skin and often wondered if that is another factor as I burn in the heat so have to be careful in the sun. Double doomed?

My sister does not have red hair and she is fine and was born in April.

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founding

Hello Cally, yes, everyone around me smoked! Forgot that bit of it. Smoke was everywhere. Good point.

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Hello Ms Halpin, others- Yes, my mother smoked starting when I was in her womb. I smoked too. My mother's sister didn't smoke. Her daughter (my cousin) has MS also; similar course. I was born in December, we were both assessed with low vit D. I think it gets very dizzying trying to find the needle in the haystack. It's a heap of factors, combined with genetics. If MS people didn't have MS genes, they wouldn't have MS. How many people born in May, or smoked, or lived in a smoking environment, or add one of the many other factors,, don't have MS? Most of them. I'm not saying don't take a supplement (I take D3, ALA, follow a diet), or a DMT (I did Interferon for 23 yrs & O for 1). I'm saying we got screwed in the MS gene pool and the only thing we can do is make wise choices and bear with it. :-)

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founding

Hi Tom, fellow December person. Quite right, there certainly seems to be and was (were when we were young?) plenty of toxicity in our environments. I believe Dr G is genuinely onto something with herpes viruses as well. Yet another factor in the mix. True about wise choices. I regret I’m not younger; there so many more treatments available. I did interferon also. (Avonex 20+ years.) I’m glad I did. Be well!

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Nov 25, 2022Liked by Gavin Giovannoni

I don't think this north-south thing is about vitamin d. I'm afraid it's not going anywhere.

Maybe it's about the low temperatures and the stability of certain viruses in the cooler regions. Those would have to be found. Is anyone doing research in this direction?

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Nov 25, 2022Liked by Gavin Giovannoni

This is very interesting to me as my mother was pregnant with me whilst living in the Far East (Thailand) in the late 1970's and she would have had a lot of access to vitamin D whilst I was in the womb. I also subsequently grew up in South East Asia/Africa and would have had a lot of exposure to vitamin D myself growing up...so I guess I can't blame my mother for this :)

However, I have been taking 10,000 IU of Vitamin D since diagnosis and I am definitely in good health (possibly as a result of this)...

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Nov 28, 2022Liked by Gavin Giovannoni

I can quite understand about mother not having enough vitamin d for me but as I am at when that is no identical. Surely my twin would feel the same way. I'm unsure as to why I inherited multiple sclerosis but my twin didn't. Our births are in November. I am the child who has run four marathons whilst having MS. My twin hasn't. I don't know why?

Victoria Levitt

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author

Unfortunately, a lot of why people get MS is chance. Most people who are risk don't get MS. It is the unlucky few who. If only we knew why we could target our preventive strategies to these people. That is if we can identify them easily in the general population.

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I am the twin who had EBV and went on to have multiple sclerosis.

See below about how I feel that having a vegan diet is so beneficial for MS patients.

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I honestly do believe that having a veganism diet greatly helps anyone who has multiple sclerosis. I know this is. I was working at a broadcasting company with type deadlines and only survived by eating a good veganism diet. So lots of plants, nuts, seeds with legumes and it really did aid me. The more I've looked into this the more I've learnt of it being so beneficial. It just want everyone to know this. I even wrote a book to get people into veganism with comedy and a main character of a sheep!

Shirley tries a new diet, it's on amazon.com as well as audible.com 🙂👍

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Nov 27, 2022Liked by Gavin Giovannoni

5000 IU a day for 6 months brought me from 30 to 75, 1.65 m 75 kg male. Maybe higher fixed dose is a bit too much. When I decreased to 1000 per day vD value decreased to 30 in 6 months so now I am staying at 2000 and see

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Nov 26, 2022Liked by Gavin Giovannoni

I wonder if anybody from the Southern hemisphere has done the same work, because it should be exactly the same line, phase shifted by 6 months due to the earth’s tilt.

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author

Correct, it flips over in the Southern hemisphere.

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Nov 26, 2022·edited Nov 26, 2022Liked by Gavin Giovannoni

I find it amazing that the Vitamin D - equator - MS hypothesis link is repeatedly reported as fact. A few years ago I got a world map of MS incidence and drew the equator on it, based on the MS incidence. The picture produced had a very wavy line which was nothing like the real equator. https://pubmed.ncbi.nlm.nih.gov/22767435/ proposed an alternative explanation that seems to have been overlooked.

The graph presented has a terrible y-axis which over-represents the influence of month of birth on likelihood of developing MS. On careful inspection it’s +/- 8%, almost a straight line if the y-axis started at 0.

The rule of thumb is that if your shadow is longer than you are tall, your skin produces no vitamin D in the sun. The half life is 15 days, so weekly doses of vitamin D3 should be as effective as daily dosing and by January, everybody living in the UK, who doesn’t orally supplement, will be Vitamin D deficient.

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author

The latitudinal gradient is decreasing we think because of the increasing use of sunblock to prevent skin cancer and its inclusion in cosmetics as an anti-ageing agent.

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author

And social changes; less outdoor activity due to gaming (boys) and social media (girls).

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Nov 27, 2022·edited Nov 27, 2022

It’s interesting that while dermatologists advocate staying out of the sun at midday to avoid cancer, rheumatologists advocate sun exposure at midday to keep vitamin D levels topped up. It would help if they got together and produced a consensus statement. Alas they continue to work in their bubbles.

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November baby here. I had low vitamin D when diagnosed. Taking 5000 IU daily.

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founding

I am an anomaly. Born in early 50s in mid-Dec in the American southwest, I had a childhood anemia. My father, son of Italian immigrants, by the age of 12 had witnessed two siblings die in NYC and his father’s meltdown after. (So, go west young man…) Therefore, I was kept in the house (literally) for most of my young years until school at 5 years old. No vit C, no E, lots of allergies, allergic to milk etc. Lots of autoimmune disorders later. (Did other p/MS have parents that sprayed nasty chemicals in the house if their kids were allergic to mosquitoes?! I look back and cringe!) All that said, I have two children born in October in Northern California. Both have between them an array of autoimmune diseases. Crohn’s, allergies, asthma, eczema, migraine. (Both were exactly two weeks late. Born 12 hours apart, 5 yrs between them. Due dates were a day even a apart! That’s nature for you.)

I think vitamin D is a BIG deal though. I don’t know why here (states) we don’t use vit D shots more. Or even test more!

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founding

Forgot with all my nattering - I take 3000 units/day now. (Thanks for this Dr G.)

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Nov 25, 2022Liked by Gavin Giovannoni

My vitamin D was really low and even "recommended" doses didn't help me much. I'm taking much higher doses now (with low calcium diet and regular lab tests to be safe) but without monitoring I'd feel safe taking 10.000IU daily.

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According to the EU's FSA (Food Safety Agency) doses of vD3 up to 11,400U per day are safe.

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Nov 26, 2022Liked by Gavin Giovannoni

What's your opinion on taking very high doses of D3 when treating MS? Do you think it's good idea to supplement high doses D3 (above 50.000U per day) while being on anti CD20 DMD? Safety aside (lab looking good) just in terms of efficacy as D3 seems to target different aspect of immune system (more T cell focused) so could potentially add to benefit from CD20 DMD. Plus I almost haven't been sick since taking high dose D3, huge difference.

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author

Not convinced by the current data. We need randomised trials and there are safety concerns around calcium homeostasis.

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True. Unfortunately, there won't be any clinical trials as no sponsor is willing to put the money in something nonprofitable even if proven effective.

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Nov 27, 2022Liked by Gavin Giovannoni

If you’re taking mega doses of Vitamin D, you need to have regular blood tests to monitor your levels.

Water soluble vitamins, like vitamin C, are excreted in urine if taken in excess. Fat soluble ones, like Vit D, can build up in your body and make you unwell.

I was warned about this by my neurologist when I disclosed that I took a mere 8,000 IU per day - I didn’t argue with her.

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Nov 27, 2022Liked by Gavin Giovannoni

Yes I'm aware of that. I also maintain low calcium diet with minimum 2,5 l of water daily to protect kidneys. Otherwise could be really dangerous.

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Nov 25, 2022Liked by Gavin Giovannoni

I was born in October in the West of Scotland in the 1970's, I already knew that being born in Scotland and being female and having members of my mother's family with MS put me at a higher risk of developing MS but I only started looking into this after my own MS diagnosis 8 years ago, I just put it down to bad luck and having had glandular fever in my twenties.

Interesting reading Prof G, thank you for sharing this, always learning about my MS.

Karen

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Nov 25, 2022Liked by Gavin Giovannoni

I was born in May, in the Southern hemisphere....

(though I was told my birth mother had worked in Canada, I'm not sure when so it's possible I was there in utero I guess. I thought that was actually before my brother was born though - we share a birth mother)

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Nov 25, 2022Liked by Gavin Giovannoni

March 1980, Vitamine D 89.3 ng/mL last month and my current DMT is Aubagio.

My hope is to take remyelinating drugs before it's too late. Dear Prof G. in your opinion if the axons are dead, myelin sheats damaged, do you think PwMS whom have spinal lesions can recover their function, for i.e. no more numbness on hands, trembling, sensitivity to touch in the fingertips, accuracy using them, etc.?

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Nov 25, 2022Liked by Gavin Giovannoni

October in England. I was born exactly a month early, which may not be a factor with my MS, but with my autism the doctor asked about that.

I can get high dose vitamin D and calcium on prescription (for my bones), but it makes my permanent nausea worse, so I buy it in a gentler form.

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I just checked and I'm taking 2000 IU vit D a day, which is the dose that was reccomended to me, but now I'm wondering if I should take more? It's a minefield though, trying to do what's best for my MS, and my bones, and trying to not be too nauteous to function at all, which I barely can anyway 🤕

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