frankoz 20/02/18
Last reply 4 months ago
The Cause of MS

Something occurred to me.
There might be two activities which maybe considered the wrong way round
They say the Immune System attacks the Myelin sheath because it is confused and thinks it is alien and this causes inflammation.
I think the sheath might become inflamed due to bacteria or virus. The Immune System sees the area of inflammation as alien and attacks it. This makes the inflammation worse. But the Immune System might be doing its job. Sadly the Immune System may also see scar tissue (after the attack) as alien and keeps attacking it, therefore relapses.
We may need to reduce the initial inflammation and suppress the Immune Systems response.
Just a thought.

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stumbler
5 months ago

Hi @frankoz and welcome.

That’s an interesting theory. All I know is that it is a pain in the arse! 😕


mmhhpp
5 months ago

Big pain . Sick of this 💩. Sorry for being so graphical. 😳


mmhhpp
5 months ago

Interesting theory @francoz


grandma
5 months ago

The cause of MS is not really a cause, you are born with it, and it takes a major trauma to your body to set off the original first relapse (hence the 40/60 women/men because men don’t get pregnant!) The first court case was about 15 years ago when after a major car crash and serious whip lash a lady in her mid 30’s developed MS six weeks later and it was proved sufficiently in court for her to win large damages because they had proved the crash and subsequent whiplash was enough to ’cause a major trauma’ to her body and could be ‘responsible’ for the onset of her MS. Something to ponder on?


novemberrain
5 months ago

I agree, only because I had my first cold sore outbreak at the same as my optic neuritis. I believe the virus caused the ON. My neuro disagrees. I have had benign MS probably 20 years with no relapse but multiple small lesions. Caused by further exposure to herpes virus perhaps? The mind boggles…


lilbird
5 months ago

That’s a really interesting theory @frankoz it certainly sounds plausible.

I’d never heard that @grandma, also very interesting. Lots of food for thought.


aabreu
5 months ago

Nice theory. Keep searching. There is a cause. I’m tired of hearing that the disease is too complicated. Complexity is a symptom of confusion.
More time needs to be spent searching for the cause. I’m greatful for all the amazing drugs to treat the symptom. But it is disheartening to see so little effort towards the cause.
Keep coming up with theories.

Some drugs work to prevent the immune cells from entering the CNS. My impression is that immune cells from the blood are meant to be kept out of the CNS. In that case, why are they found on the wrong side? Why? Is the BBB damaged?
I’ve read that EBV may be part of the problem. Proteins produced when EBV becomes active might lure immune cells to into the CNS. I think a company called GeNeuro is working this theory and are in clinical trials. I looks promising.


frankoz
5 months ago

Interesting comments.
I agree that potentially we all carry the MS possibility and that something triggers it. I was bitten by a deer tick, lots of similar MS type symptoms, I had prolapsed a disc in my lower back over 40 years ago and the Primary Progressive MS seemed to focus on the scarred disc area which is why I initially thought it was a reoccurrence of the old back injury symptoms.


aabreu
5 months ago

I fractured a neck vertebrae when I was 17. Is this a possible inlet for immune cells


lilbird
5 months ago

I’m fairly sure I’ve read something about spinal injury theorized as a possible potential cause way back that I don’t remember the detail of at all @aabreu. I realise this is a totally useless reply 😄 but if I’ve read it then plenty of others on shift must have, so hopefully 1 of them will be along soon to enlighten us 😉


potter
5 months ago

I wasn’t diagnosed until I was 55 but I have had MS symptoms it seems forever. When I was 14 I had juvenile arthritis for a year, I was in and out of hospitals running a 105 degree temperature a week at a time. I have MS genes in my family I have always wondered if this set off a chain reaction. My other thought is that I was diagnosed after I went through menopause. Several scientist think their is a connection between hormones in women and MS. Pregnant MSers usually don’t have any problems with their MS until after the birth of their child. I have talk to several women who were diagnosed with MS after menopause. Potter


frankoz
5 months ago

sorry, I forgot to mention,
Several months ago my right arm and hand were getting heavy and clumsy at the end of the day. I saw an article in an MS publication that Biotin (vitamin H) was useful. I started taking several 300MG tablets and there seemed to be an improvement. When I subsequently saw my neurologist they suggested a higher dose, so I had 3000MG tablets made and they have removed my heavy clumsiness. OK it could be a Placebo effect, who cares. When I saw my neurologist recently, they found that I was stronger than I was 9 months before, so they asked me to have a head/spine MRI to see if anything had changed.


lilbird
5 months ago

What was the outcome of the MRI @frankoz were there any signs of improvement?


patrickm
4 months ago

I think it is in your genes and going through a stress full experience triggers it. My mother was bed ridden for two years before she passed and she lost her mind. I was smoking very heavily and being stressed out triggered my MS. Recently my neuro told me that I have had MS for 5 to 10 years which would put it around that time. Maybe low in vitamin D along with stress triggered it for me. I have heard of three different people that have conyracted MS after going through bad divorces.


cherish
4 months ago

Heya @frankoz

Hope you are well.

Can I ask why your neurologist suggested 3000mg of biotin? And do you mean 3000mgs per day?

I take 300mgs per day and the Neuro and rehab consultants want no part in it but said it’s my choice. I have took it for around 2yrs.

I had a fractured skull when I was 15, then septicemia when I was 16.
It often makes me wonder if they played any part in this f****g magic and sparkle disease. Then from 19yrs old to around 24yrs old my teeth kept breaking and they constantly got filled with the pesky amalgam (now removed some years later).

What an interesting disease this is 😂😂

Lisa x


frankoz
4 months ago

yes, I take 1 x3000mg capsule a day. It helps me and as there are no side effects I will continue taking them.
I agree with others that we all might carry the potential for MS and it needs a trigger to start it. I suspect they should treat the inflammation first, and quickly, then suppress the immune response. Help the body and stop trying to find a cure, there isn’t one.
To be totally boring, there are two and a half million people with MS. There are over seven billion people, so the people with MS equals 0.035%, and my PP MS is only 10% of those so it is relatively rare when you compare it to Malaria, which effects a lot more people and can be fatal.
Sorry, I said it was boring. MS is an interruption not the end, and the term disabled is incorrect, it should be DIFFERENTLY ABLED. I frequently meet people with severe cerebral palsy, they are driving motorised wheel chairs and operating computers with one finger. There is a quadraplegic nearby who operates everything with a stick attached to a head band, they are DIFFERENTLY ABLED. MS does not give me bad days just not so good days 🙂


stumbler
4 months ago

@frankoz , I like the term “differently abled” and your comparisons. It puts things in perspective.

Personally, I have always used the term, “lesser abled”. 😉


frankoz
4 months ago

Southwick! Amazing. I was born and raised in Brighton and met my wife there. We emigrated to Oz in 2003 and it is great. I live in Melbourne, a suburb called Ormond which is close to the suburb of BRIGHTON.
Southwick! I know about it and that might make me an undesireable! Haha


chandeliercharm
4 months ago

I was in a toxic relationship when i was diagnosed. I was high stressed. We were in our 7th year and there were more bad than good times. And my aunt died quickly and suddenly of breast cancer So, i do believe it possibly lies dormant in us and stress brings it out. It does make perfect sense of what causes MS.


merfield
4 months ago

Interesting theories all. Thinking back, I fell injuring my lower spine in 1976 appx resulting in surgery 2 years later, and from that time roughly I had bouts of feeling ‘ my legs were someone else’s’, they seemed to have a ‘will of their own’. This wasn’t often and I was only diagnosed with ppMS in 2016 having noticed my gait was ‘a bit wobbly’ most of the time since 2013 appx. It could be that MS was initiated following surgery but didn’t get a grip until many years later. Stomach ulcers are linked to stress but also to helicobacta pylori bacteria so by the same token there’s possibly a link to the immune system and an unknown bacterial or viral cause of ms.
Funding for research is key. Thanks @frankoz. Xx


frankoz
4 months ago

Hello merfield, the more I see in the replies from others with MS I think it points to a trigger situation for something that everybody carries. I also prolapsed a lower back disc 44 years ago and I have always had “symptoms” which I now understand.
Having seen recent results from investigation in the “micro biome” there is more going on and can be helped than we realise. As I said before “stop looking for a cure, help the body treat the symptoms” it will repair the Myelin as best it can, just help it.
Lecture over.

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