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Theories of MS

Hi, has anyone asked their neuro about the theory of MS?

I don’t have MS but in 1990 I had radiation treatment for cancer in the neck area. At the time I experienced l’hermittes and was told that the radiation had obviously touched and aggrivated the cervical spinal cord. I recovered well from the cancer and the l’hermittes. But 5 years ago I started to have symptoms of mild progressive MS. After loads of MRIs I have been told that I have nerve deterioration in the area that was aggrivated by the radiation in 1990. He told me that we all deteriorate as we age but areas of previous damage will age quicker. I am 50 now and he said that is the age when SPMS can happen and it is when nerve damage occurs under old MS lesions. In my case MS has been ruled out because the LP and brain scan were not indicative of MS.

Apparently someone can have a CIS and 20 years later when they are 50 have problems with the nerves under that lesion. Also it is just a coincidence that attacks stop or slow down when the deterioration under old lesions starts to happen. RRMS kind of goes into remission in old age. SPMS is just deterioation from the years of onslaughts ie it not actually the immune system doing the damage which is why the DMDs dont stop the deterioration.

PPMS is probably benign MS. The immune system has done its dirty work silently and quiety. Then when the person reached their mid forties then bam the nerves in the CNS deteriorate and they get symptoms. DMDs dont work as the immune system is not attacking the nerves.

This has obviously struck a chord with you but I suspect would not apply to all people with MS.

Can I ask what is the origin of this theory? Who published it and where?

Have you asked your neuro?

Benign MS is not PPMS. In benign MS, you have relapses but recover from them, without progression. The DMDs are great for this type of MS.

RRMS is usually called ‘benign’ to begin with. If you have more relapses than 2 per year, then it’s RRMS and yes, the DMDs work for this too. I take LDN and Rebif and a strict diet and Fampyra and a lot of drugs to regulate my BP due to damage from a relapse.

A relapse is a brain injury. The brain is being damaged by the inflammation and stripping of the myelin sheath. Recovery will take about the same time as any other injury to the body. The more relapses you have, the more damage to the brain.

In PPMS you don’t have relapses but you have progression, maybe slow or fast depending on any number of variables. So far the only drug that seems to be helping is a high dose of a statin. Or possibly LDN.

SPMS isn’t going to happen to everyone. Yes, it’s perceived as a plateau, however, the MS could still be active with progression and also relapses.

Excuse my bluntness, but if you don’t have MS, then you are fortunate. I wish I didn’t have MS either.

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Sorry it was a chat with my neuro that said all this. I didnt mean ti say benign MS is PPMS I meant to say that people who get PPMS have permanent nerve damage same as SPMS. This is not caused by the immune system which is why DMDs dont work. In SPMS nerve damage happens because the area has been damaged in the past (like skin damage from too much sun manefesting itself years later). My neuro thinks that people with PPMS have previously had attacks to their nervous system (relapse) but were so mild they were not noticed. Then when the aging process begins then those areas of previous attacks lose nerve cells/die.

I look like have PPMS but in my case the initiall damage was not from my own immune system but from the radiation. Either way I am suffering with spasticity and foot drop bowel bladder like everyone else with damage to the CNS.

It is well known that MS is immune system attacking the myelin sheath. Permanent damage is the nerves underneath. It is well known known the DMDs dont stop nerve damage and that the damaged nerves are in the areas in which there are plaques.

I am one of those people who likes to know why it is happening and not just what.

Moyna

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It is also well known that DMDs reduce the number of relapses thus reducing the amount of damage to the myelin sheath (plaques). If the myelin sheath suffers less damage over time there is a lower incidence of axonal loss (nerve damage).

By reducing the number of relapses DMDs protect the brain and spinal cord from cumulative damage and can delay the onset of SPMS and with some of the newer DMDs there is now significant reduction in disease progression.

I think some of your understanding of what your neuro has said is a bit muddled. It certainly isn’t as simple as what you are saying but to be implying that DMDs offer no protection against nerve damage is incorrect.

The DMDs all in varying degrees work to do precisely that.

I suggest you need to brush up on what is happening before wondering so much about the why…

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If you knew that, Moyna, you could make a fortune!

I had thought ‘benign MS’ was one where demyelination activity was occurring but with no symptomatic manifestation.

I had also understood that DMDs mostly inhibit this process of demyelination and thus have a net effect of undermining / decreasing the rate of permanent damage. ie. they primarily help to minimise the sum total of neuronal interference, but do little to fix that which is already broken.

Cue weak metaphor: DMDs are like car wax your car; it helps to prevent the onset of rusting, but it cannot really help in taking the rust away or indeed filling the holes caused by corrosion.

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yes brog you are right DMDs reduce relapses and hence plaques. No plaques then no nerve damage. But if the damage is already there the DMDs cant stop the nerve damage happening. Which is why people with PPMS and SPMS are not given DMDs. Please correct if I am wrong.

DMDs try and stop the damage happening in the first place ie keeping the myelin in place and heathy to protect the nerves. There is nothing as yet to protect the nerves from deteriorating under an old plaque.

I asked my neuro why am I having problems 25 years after the radiation given that I had recovered so well. His answer was it i like RRMS going to SPMS at about the age you are. Damage has unfortunately happened to your spinal cord and becuase you are aging that area is deteriorating quicker than it should be. Basically same as SPMS except that the damage inially was not caused by immune system. ie damage to myelin - get better - then nerve damage etc

I have been told that there is nothing that can be done to stop it continuing.

I really hope I have made myself clear this time

Moyna xxx

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I’m primary progressive Moyna.

I don’t have a neurologist or MS nurse, so learning a lot from you guys beside what I read.

I find what you say interesting-you obviously have a good neuro, who is happy to discuss things with you.

xx

I don’t know exactly what damage your radiation caused to your spinal cord Moyna. But trying to compare degenerative spinal cord injury to MS is a bit of a long bow.

I have spinal cord injury as well as MS so I understand a bit where you are coming from but the two processes are quite different.

I busted my neck some years ago and was patched up very well with minimal spinal cord injury but as I get older the degenerative ageing process is being speeded up in my neck due to the pre-existing injury making me more prone to nerve compression which gives rise to neurological problems which to all intents and purposes are very similar to my MS ones as they are caused by nerve compression which can give rise to lesions on the spinal cord. Same result, different cause. Not very different to you. (And bloody confusing for my neuros!)

BUT in MS the inflammatory process doesn’t just stop as you seem to be implying and then the nerves deteriorate. It is far more complicated than that and indeed axonal loss occurs very early on in the disease process. There is very little relationship between pre-existing damage from injury and the natural ageing process and MS and its progression.

Your neuro seems to have been answering your MS related questions in an MS related vein to satisfy your fascination with MS but if you hadn’t approached it in the first place from an MS perspective his answer would have been different.

I don’t want to be blunt but you don’t even have MS so why are you even posting on the Boards? Why not find a Forum related to spinal cord injury which would probably better suit your needs?
You are trying to find a correlation between two disease processes which simply doesn’t exist and in doing so probably not getting the support you really need for the symptoms you are dealing with as a result of the damage to your spinal cord.

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Brog I think that you are being a bit blunt with me. I was dx with this radiation thing in 2011. In 2012 I went to see another neuro and he instantly said PPMS or SPMS and dismissed radiation idea. That is why I joined this board in the first place. Anyway because my LP was negative he said he wouldnt Diagnose MS. Now the thing that confuses me is that there are people on this board with MS and negative LPs. His view was negative LP then NOT MS! . When I told him this he said that I shouldnt be looking uo google!

I decided to stay with the first original neuro who said it was the radiation yet he cannot guarantee that it is not progressive MS.

There are no sites for progressive spinal cord disease due to radiation because it is so rare.

I get a lot of advice from this site as the drugs that I take are similar to those you guys take ie baclofen, Tizanidine. I have even had a trial of fampridine.

I will continue to stay on this site until there is some test that can rule out MS for me 100%. Also if I hadnt had the radiation in 1990 I am pretty sure that I would have a probable MS DX.

Moyna xxx

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Well said Moyna

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i have my own theory for my ms-its one i can cope with. surely that the important thing in dealing with this malarkey? actually that covers any illness-as long as it fits in with our want we are satisfied. i have been loitering around on these boards for 8/9 years now and have seen many changes.

i know humans want understanding/explaination but sometimes there isnt one which really infuriates us-acceptance is the key and get on with living.

i dont want lynched but i people seem so defensive nowadays-that their neuro or the persons opinion is right and all else is wrong.

i have a view of whats being discussed but it doesnt matter in the big wide world and i hope that we all find a way through today…tomorrow will take care of itself.

i really miss the old gang when we all chatted without the need for someone to be right-we accepted we all are struggling and supported each other… i see the old names occasionally and it makes me smile knowing that they are still around (you know who you are-theres a couple in this thread!)

ellie

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Thnx Blossom. xxx

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You are welcome Moyna. If you are happy to be here then I can’t see a problem. ((((((Hugs))))))

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Hello again Moyna.

MS is a hugely variable disease and diagnosis is made using a combination of a variety of indicators: the consultants expertise, MRI, clinical exam, symptoms, LP … I was diagnosed without an LP. Google has its uses, I’ve just researched brick laying patterns on it, but there is a lot of misinformation out there in cyberspace. For a complicated medical condition I would probably give it a miss as it is impossible to take into account all the factors a consultant would, given their years of training

Brog was only trying to be helpful, I am sure, in suggesting that you may find a support group which is directly concerned with your condition to be more useful.

I am glad that you’ve found help and support on this board but please don’t be surprised if you post some personal conjectures which are then challenged.

Anne

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Moyna, do you have lesions in your brain or spine?

A clear MRI and a clear Lumbar Puncture usually rules out MS and it becomes a wait-and-see situation.

To be honest, if you don’t have MS and just think you do, then this seems very unfair.

Your original post was full of errors and to infer that somehow most people don’t have an interest in their condition is a bit of an insult.

And for heaven’s sake. This is like playground behaviour. What is going on between you and Blossom? Why not just send hugs to each other by pm?

I’ve had a particularly trying day with exhaustion due to over work and a right leg as stiff as a board. It’ll pass off by tomorrow once the Fampyra kicks in, (or not). Fampyra helped me go back to work as a musician. I wasn’t able to stand for more than 5 minutes, which is difficult when you have to sing or play the violin for 20 minutes and some how hobble away.

If you don’t have MS. Of course hang around, but don’t insult us by trying to teach us about MS. A lesion is an area of demylinated brain, which fills with liquid and then glows in an MRI.

A relapse can happen out of the blue. It messes up your life for weeks and months. I don’t want 3 relapses a year, so I’ve been on Rebif since 2000. I have relapses once every 3 years or so, but I still resent them.

I’d shrug this off normally and walk away. Which is exactly what I’m going to do and go to bed early because I’m tired and my nerve pain is hell. This is life with MS. If you don’t have MS, then please refrain from ‘informing’ people about a disease that you don’t even have a diagnosis for.

yrs grumpily,

K

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  1. I am sorry to have offended any one as I did not mean too. I have lesions on the spine C3 to C5. A lesion on the frontal lobe too which has since diminished in size. It is just that me neuro said that you cant have MS if the LP was negative. He said MS is a disease of the immune system working in the CNS and if you have a negative LP then you have no immune system in CNS so therefore it cant be MS.

Yet on this board some people do have negative LPs. The whole thing just confuses me.

To be honest I think I do have it.

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Yep I asked her years ago. They seem to have lots of theories about MS. The big one apparently is autoimmune but what about this I read recently?: “The central tenet of auto-immunity postulates that the immune cells of the body attack normal tissue. Somehow, it is postulated, a component of the normal tissue becomes an antigen in multiple sclerosis patients and is said to attack the myelin which forms the sheaths around many nerve fibres. However, a trigger is usually suggested which initiates the sequence of events. It is usually claimed that it is a virus. However, no virus has ever been found in more than 60 years of research; which has even included biopsies being taken from the brains of patients during acute attacks. Equally, no antigen has ever been identified in normal tissue. Despite the lack of scientific evidence the viral-auto-immune theory is often presented as certain fact.” This is on page 240 of “Oxygen and the Brain. A Journey of Our Lifetime”, Best Publishing Company.

So my question is, now where are we? What does multiple scleroses mean anyway? They are scars or lesions aren’t they? but it seems no one knows what causes them and no one knows why they are on the spinal cord and the brain. I looked on the MS Society and it seems to confirm that there is still no known cause and no viruses etc.

Hi Moyna

Apparently there has to be a trigger like a virus to start off the sequence of events and according to the MS Society info on “causes of MS” no trigger has yet been found just lots more theories about what “may” be a trigger. Seems ot me that the autoimmune hypothesis is one of many unsupported by evidence. I have had it since 1980 and obviously lots of chats with neuros but still nothing scientific.