Do we share anything in common? (other than the obvious..)

Everyday living
1

No doubt this has been done before but just thinking of all the various theories about MS and whether there’s any truth to them…here we have a group of people who all have MS and I’m wondering if there are other factors that “link” us and might point to there being some credibility in any particular theories?

Just throwing a few things out here, not saying that there are necessarily hard and fast causative claims behind all of them…

  • Low Vitamin D

  • Not the kind of person who likes to spend a lot of time outdoors / didn’t spend much time outdoors as a child

  • Background of depression / anxiety / high stress PRIOR to diagnosis or start of serious symptoms

  • High fat diet

  • Drinks more alcohol than average PRIOR to diagnosis or start of serious symptoms

  • Eats a lot of meat / doesn’t eat much meat

-Sedentary / didn’t exercise much

-Got a lot of sleep / very little sleep?

  • Smoker / non smoker

  • Suffers from IBS / digestive complaints

  • Overweight?

I wonder if there are common factors / can you think of any other potential links that might have come up before in various theories on causes of MS / predisposing factors?

2

No.

It’s no respecter of persons.

It can strike anyone, of any background, and regardless of lifestyle or personality traits. Don’t beat yourself up about what was “wrong with you”, or what you did wrong, to get MS.

I think smoking is one of very few lifestyle factors that has been shown to increase risk, BUT that is not a cause in itself, as lots of people smoke who don’t get MS, and conversely, lots of non-smokers still get it. So if you smoke, or have smoked in the past, it’s not quite as simple as saying: “that’s what did it”. There’s no guarantee that not smoking would have stopped you getting MS.

It’s now known beyond doubt that there’s a genetic element, but there’s no one gene that always causes MS. There are several dozen that have been identified as risk factors, but even someone who had all of them would not be certain to get MS. They’d just be at higher risk. Most of the genes discovered so far have to do with the functioning of the immune system, which lends weight to the case that it IS an auto-immune disease. Some of them have also been linked to Vitamin D, which strengthens the case for that, as well. We might have some sort of defect that means we can’t produce enough vitamin D, or can’t process it properly.

I certainly believe there’s a genetic element in my case, as I found out after diagnosis that I was not the first in the family. The relative who had it before me was quite distant - my grandmother’s sister - but I still believe it’s not just coincidence, and we probably both had enough “dodgy” genes to be at higher risk. That means other members of the family probably also inherited a higher-than-average risk, but it doesn’t mean they are destined to get MS.

Seriously, don’t torment yourself with this stuff - there’s nothing you could have done. NICE guidelines actually say your neuro is supposed to reassure you at the time of diagnosis that you didn’t cause it, as many patients are plagued by questions of whether they somehow brought it on themselves. There’s absolutely no evidence it’s a lifestyle disease, but many neuros forget to mention that, leaving patients struggling with feelings of guilt and “what ifs”.

As a wise poster here has been known to put it: “Sh*t happens!” That, in a nutshell, is why you have MS.

Tina

3

My doctor said nothing I did brought it on however, a neuro once told her it can be a serious of factors and one just broke the camels back so to speak. It was suggested not from my doctor that having my daughter was the trigger locally quite a lot of females got it after having their second child. The suggestion was made by a professional as they had seen a few clinically isolated syndromes after having a baby. I have had ebson Barr virus before too which I know has been shown to link Also I smoke And it hAs came out my great grandma they think had ms. So could be a genetic link. X

4

I am a true believer that there are genetic factors! 5th family member in 3 generations to have ms. Not blaming the genes entirely but i think it has something to do with it

5

I too believe for me its a genetic factor. My grandad had m.s. I also had glandular fever as a child which I believe is linked. Probably had a poorer diet and didn’t exercise as much pre diagnosis but nothing major. If anything between the years of 18 and 20 was bordering anorexic. I am much healthier now but really don’t think that had a connection to the m.s. never smoked. Drank a lot in line with being young but then only drank at weekends and that wasn’t every weekend. So not sure if we have many common factors. Oh and I’ve got red hair. Not sure why I’ve thrown that in just thought that’s a fun factor :wink: xxx

6

Hiya

In my humble opinion and for me, seeing as MS is quite personal, I think it is a combination of 2 things:

Underlaying gentic factors as my grandad was a diabetic - autoimmune. Mum got thyroid problems - autoimmune. Elder sister has migraines - autoimmune. Next sister ectopic pregnancy - autoimmune. Me? Good old MS which they think is autoimmune.

Now that combined with the ‘trigger’. I got chicken pox at the age of 20 and it has been down hill from there.

If some bright spark finds the cause of MS - you need to find why out it’s broke before you can fix it - and agrees with me, I got there first. LOL!

Marty

7

I was the healthiest person, never been ill in my life, slim, fit, non-smoker. Also my family are healthy and extremely long lived. There is MS in my extended family but none of us are related by blood. I was under extreme stress at work, which may have brought it on, but I think it was there already, just waiting Sh*t definitely happened

8

I’m with Wilf,

non-smoker, spent time both inside and out as a child. No MS anywhere in my family - extended or otherwise. Cancer seems to be the one that gets us cause we are usually a long-lived family too.

One theory I heard was that low vit-D in the early developement of a child in the womb almost gives a genetic susceptability and then an eternal factor triggers it in later life. But they are all theories. Personally I don’t think there is any one factor that causes it.

JBK

9

I heard about the vitD in womb too, I asked my mum and she said she was outside working on an allotment throughout her pregnancy with me. That threw that theory out the window!

10

Not sure about the vit D in the womb. I come from a long line of outdoorsy people. I have spent my entire life outdoors (apart from being cooped up in a classroom at school) and still my vit D level was 12 when last tested. Have never smoked and am teetotal and eat low fat diet. Only gained weight when mobility problems/pain impacted on my life. Genetics umm - 2 aunts with lupus, mother with thyroid problems, grandfather with unknown mobility problems. First symptoms after giving birth to second child. Had serious bout of chicken pox as an adult. Basically think it comes down to nobody knows for sure and it is a combination of factors.

11

Hi i cant even think what may or may not of triggered it , all i know was i was sat in my lifeboat seat strapped in tight as it was an awful night most of the time my window was awash with sea , i noticed as i was plotting our course for the missing person and i noticed my hands were shaking badly i then noticed my head was a yes yes tremor this followed by a complete feeling of fatigue and feeling unwell , i had never had this whilst at sea before anyhows after 3hrs i really wanted to be home as i felt that bad and exhausted , when we returned home i told the coxswain what had happened and after getting a telling off for not letting him know during our search that my radio log under red lighting was disappearing i.e. the pen ink just kept fading in and out this then led to both investigations and my career down the tube , could stress of been the trigger ? i dont know tbh , im a smoker and only 1 in my family and past generations to have it , i just hope that by sharing thoughts and helping folk that others in years to come and my children dont get it.

hope that kind of answers your question briefly , i also have PTSD due to some other things connected to the lifeboats not sure if this makes it worse but i know before i was put on PTSD/Depression medication i was in a bad way mentally perhaps this didnt help either , i dont know nor do i pretend to know, all i do know is if by sharing anything helps 1 person or find a treatment im happy to devulge all.

respect sheep

12

hiya

as i have said somewhere before on here i have my own theory re why i have ms and it involves accepting responsibilty as to how my life style could have contributed.(doesnt involve smoking or drinking) i dont blame myself. i accept that i could have coped better. for me this has helped me enourmously in coming to terms with how i am living now. BUT i am aware this is unusual. but for me its easier to understand than the ‘luck of the draw’ idea. if i in some way contributed (including genetically) then i find it easier to cope with the state i find myself in now… but each to their own-this i do believe…we all have to cope in our unique way