Lesions just what do they do ?

Everyday living
1

hi everyone i was dx over 5 years ago i was told i had both lesions on my spine and in my brain.the problem is no one ever really has explained to me exactly what these lesions do and what it means to the ms you have. i know some people say they don,t have them.So what exactly do lesions do.my nuero never really gives me an answer she just says that unfortunately i have them both in my brain and on my spine.can anyone give any info on what these lesions do to me as i would like to know?

thank you x

2

Hi Mistymoo

It depends on where you have the lesions exactly which gives the professionals a clue as to what will not work as well if the lesion is in the area that controls that part of the body (if you know what I mean). When it was explained to me 8 years ago my MS Nurse said think of a lesion as a scar so that part of the wiring is scarred with the lesion which makes it difficult for the messages to get through.

I have them both in my brain and spinal cord. I think a lot of us do to be honest.

I hope I am right in what I am saying. Hopefully you will get some other replies.

Take care.

Shazzie x

3

Hello mistymoo

I have brain lesions. They have effected my memory, speech, word finding, writing…I could go on.

I have spine lesions. My neuro told me they are responsible for my gait/ balance problems, incontinence.

I have primary progressive ms. Is this what your asking mistymoo?

4

I think of lesions as roadworks and accidents on the neural road network. Sometimes the neural traffic can find an easy diversion, and the journey just takes longer. Sometimes one lane is still open, so the journey just takes longer. Sometimes there’s no way around, and it turns into a bad day! As others have said, it depends on where the ‘incident’/lesion is. Alison

5

thanks for the info i now have a better understanding of the whole lesion thing.

many thanks xx

6

I’ve always wondered, it really worries me, because in my last appointment the neuro i saw said I have leasions in top of my spine. Does that mean i’ll end up in a wheelchair, as i already can’t walk a great distance without right leg going funny like drop foot.

Mel x

7

Hi Mel, my right leg’s been like that since diagnosis in 2000. I’m still walking. I have days when walking is okay and others when it’s all weird.

I have a step up to our kitchen. When I put my right foot on the step, it’s as though I’m watching it on a video. I know that at diagnosis, there was very little nerve traffic in my right leg and the technician asked how I’m able to walk. Yet, I can.

As long as I can see my foot, I’m okay.

This is just to show you that this isn’t the end of your mobile and full life - since diagnosis, (I started on Rebif immediately) in 2000, I’ve learned 2 languages and am studying the violin. I can play for 2 hours now and if you’d asked me 7 years ago if this would be possible, I’d probably have burst into tears.

At that time, I could only walk a few metres. Never give up on yourself. 5 years ago, I was so scared of speaking Spanish to people on visits here, that I’d hide. Now, after a lot of lessons and laughter, I do pretty well.

I have bad days. I overdid things last Monday and my right thigh muscle was rigid and my arms were floppy. Next day, I was a bit better and now, I’m about 80% recovered.
I hope this helps a bit.

xxxxx

8

Hi,

Yes that does help,

Thanks very much

Mel x

9

Hi, i had my first and only mega severe MS attack which lastest Jan to May this year. The lesions went to my brain first then to my spine. I felt everyone of them lesions - dizziness, VI nerve palsy, twitching feet, loss of strength in arms, purple feet and numb toes, bladder issues for two days, constipation. Now I twitch. I’ve written to the neuro as surely I’ve had enough lesions with symtoms to last me a few years. So don’t need anymore for a while. If I get another relapse like that I think its going to wipe me out. It makes me think my atack was not MS but something more sinsiter…

10

Hi Mel,

Just to reiterate what lapreguicera said, really: I think most of us with MS can expect to have some spinal cord lesions eventually. With me, it was the first thing to be found - even before the brain lesions.

If spinal cord lesions inevitably meant the person would need a wheelchair, I think that would cover most people with MS. I’m not trying to play down that some of us do/will need a wheelchair. But we know for sure it’s not everyone, so spinal cord lesions - like most things with MS - are not a very reliable indicator. If everyone who had them always needed a wheelchair, there would be a lots more of us in wheelchairs.

Tina

x

11

I have lesions on the top of my spine. Generally they don’t cause me any problems but now and then they get inflamed and as a result press on my spinal cord and cause numbness and tingling.

I do worry that if they persist in getting inflamed and scarring over that it’ll cause me a host of problems as they are so high up they affect my arms and my legs but I guess I’ll cross that bridge if I come to it.

12

Hi Mistymoo,

Just to put my tuppence worth in, I have lesions in brain only but my only symptoms are in my walking - I have truncal ataxia which means I walk like a drunken sailor (no drunken Irish jokes please - I’m Northern Irish).

I don’t think there is any way of saying that lesions in one place mean one thing and lesions in a different place mean something else. Sympoms seem to be quite personal.

JBK xx

13

Hi, I’ve worked out I don’t technically meet the MS criteria will be interesting to see what my neuro does now. Labyrinthitus In Oct 12, then widespread attack of brain and spine Jan-early May. One MRI in Feb during the double vision (before the spine got involved a few days later). Second MRI was in Sept so that doesn’t show proof lesions were not all together. It would be a third MRI thta would show proof (if new lesions are evident). Another thing is a widespread attack in one go with lots of lesions (brain and spine) normal for MS? I thought MS was localised attacks building up over time, covering brain and spine.

14

There is no such thing as ‘normal for MS’. Every one of us will have a different story to tell. Dx is not a tick-box exercise: if it was, the YTS trainee (there’s me, showing my age) could learn to do it in two days. It is about professional judgement and years of experience and training, which is why consultant neurologists earn a lot more than you or I do.

By the way, many of us (me included) only had one MRI scan pre-dx. At the risk of contradicting myself on the ‘no such thing as normal in MS’ front, one MRI is probably normal!

Alison

15

Hello, I was just wondering this myself and pound this post. My ms nurse told me at a seminar they showed her to pictures one brain and spine covered in lesions, the other with just a few lesions and said guess whose symptoms are worse…well you know he answer…how can it be the one with less obvious lesions. I was told at dx in 2011 that I had lots of lesions in brain and spine including a 2cm one in my brain. I was totally deaf in one ear and had balance numbness and fatigue. Since them hearing has improved but not 100% and lots of other residual damage hanging around like numb feet and fingers etc. can the lesions repair themselves to a certain extent and the stuff they see on MRI is the scarring? Is then the residual ongoing symptoms from the scarring. Sorry if I sound a dumbo I can’t get my head round it sometimes. I’ve jumped on your question mistymoo and asked a few more, hope that’s ok? Happy healthy new year. X

16

The location of the lesions is the most important thing I would think. We don’t use the majority of our brain so one person could be riddled with lesions and no symptoms because they are in “useless” areas. But another person might only have a few lesions but if they are in a useful area then they cause obvious symptoms.

When I was diagnosed I had 2 spinal lesions and one tiny speck of a brain lesion.

A year later I have more lesions but less symptoms.

17

Yes, absolutely - it’s location that’s critical, and whether the brain has any viable “workaround”. There has been at least one recorded case of someone born with only one brain hemisphere, who did not present as disabled or learning impaired, and led a normal life. Though in that case, it presumably helped that the intact hemisphere had always had to assume all the duties - it didn’t have to learn how to take over, following sudden damage. But it illustrates how resilient the brain is to bits, or even lots, being missing. It’s largely a matter of luck whether the damaged bits are something other areas can cover for, or not. I don’t personally believe any part of the brain is useless - it’s just doing things we don’t yet understand. But having said that, some parts have much more critical functions than others, and we don’t cope so well with losing bits of those. T.

18

Hi, the thing is I felt my spine being attacked and I wondered if anyone else had expereinced that?

I was laying down in bed about four days into the oral steroids and my back/ spine kept trying to straighten itself. It did this about ten times in one go automatically over and over again. My legs kept going straight together. Its horrible to think of it and it gives me the creeps when i think of it now. i didn’t panic as at the time as I thought all symptoms other than my vertigo and double vision were caused by steroid reactions. I probably should have dialed 999 at that point but I was completely ignorant to what was going on.

19

Helebon,

Don’t worry, you can’t actually feel lesions - only their effects on the body, which are caused by nerve signals not being able to get through properly - or sometimes bogus/garbled nerve signals getting through.

MS is very rarely a cause to dial 999, as it’s not a life-threatening emergency. Only if you couldn’t breathe properly, or something very urgent like that. Otherwise, it’s the GP, MS nurse or MS-clinic, who will be better able to handle it.

Tina

20

Hi Tina thanks for the support. Its just that I have only told my neuro in a letter all my symptoms and he didn’t know my symptoms were so extreme. It will be intesting what he thinks now. Either I have Marburg MS or it was a case of ADEM and only time will tell. Here is what my symptoms were and you might be surpised for a 1st MS attack. My attck was polysymptomatic. The 999 would be to get on IV high strength steroids rather than the oral tablets I was on as I could of done with higher strength for longer.

Fuzziheadedness for 1 day followed by vertigo for three weeks (From 1st Jan)

Double vision (VI nerve plasy) went to both eyes (From 19th Jan, eyes recovered by early April)

Extensive twitching of feet at night, some in arms. Some left foot jerks .A little twitching during the day. (started night of 19th or 20th Feb)

Severe brief pains in feet and ankles (19th or 20th Feb).

Both feet swollen with fluid and reduced to purple feet/toes (you examined left foot). Right foot healed rapidly in around two weeks, left foot/toes still purple, small numb area on two toes (19th or 20th Feb).

Loss of strength in both arms, I am right handed – trouble lifting a dinner plate with food on due to the weight (noticed first 20th Feb, recovered quite a bit of strength by August).

Sore neck in bed and very tense shoulders.

Unable to sit in dining room chairs/computer chair as caused sore neck and left shoulder (First noticed 19th Feb). Dr Sharma mentioned this might be caused by something in my lower spine (a lesion i’m assuming).

Hair thinned, acne on my chest, back and neck.

A few or more nights of eye pain around 20th Feb, steroids taking effect I guess.

Two days into steroids went numb between legs for a few minutes, I rubbed area and sensation came back, then two days of bladder problems followed which resolved. (22nd Feb) Heightened sensitivity – felt like I was sleeping on a very hard surface for a night (March).

Stinging and prickling back when sitting back in chairs sometimes (March onwards).

Developed tender patch on top of head at start of steroids, in same place as banged head in August 2012. Unable to wash this part of head in shower and had to gently use water from a cup. Patch resolved by early Sept 2013.

A night of feeling short of breath.

Many many weeks of severe very painful constipation (causing me to cry), caused bleeding/haemorrhoids/fissures. I cut out wheat, gluten and milk. Then constipation started resolving early May.

An evening of very painful aching back legs (June).

Sore lower back and coccyx area (due to the constipation?) (June - Sept). Coccyx area sore when lying down during follow up MRI scan.

Sorry to hyjack the thread xx