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spinal lesions only?

Hi folks

I’m not ppms but think you’ll probably know better than others.

I have long felt that I’m spms but was still having relapses, I had an mri last year which showed no lesions on the brain, although I am still having flare ups of ms every couple of months and my walking is becoming more difficult.

I’m having another mri to rule out rrms, so am I to take it that people with progressive ms only have lesions on the spine?

Thank you for any replies.

Hi Corkie, I have only brain lesions and dx PPMS… so no it doesn’t have to be spinal lesions only.

I think generally people with PPMS are more likely to have spinal lesions than those with RRMS… and I think some only have spinal lesions.

But as with everything MS, there is no one size fits all.

Although PPMS can vary by the day there are not relapses and remissions. There is one type of MS called Progressive Relapsing MS (PRMS) and I’m wondering if you maybe have that type. Only time will tell.

Hope you get some answers soon. Nice to see you on here,

Pat xx

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Thank you Pat for that information it’s helped me understand more clearly but it’s very confusing, I’ve been on Betaferon for 5 years but don’t think it’s helping any more, I don’t have a break from the flare ups,the Neuros are in agreement that I should stop Betaferon but I’m having the mri to make sure there are no brain lesions. It’s all very strange

Wendy xxx

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Hi Corkie, I am not diagnosed yet. Been under investigation for 5 years now. I have no brain lesions either and my neurologist (MS specialist) says that he has never seen someone with MS with no brain lesions at all! There is a dodgy area on my spinal cord though which is the cause of my problems. I also have a clear LP . There is a possible thought that I may be suffering for neurodegeneration from radiation I received 25 years ago which was in the neck area.

I have had a couple of sort-of flares although it is mainly increasing spasticity/weak in right leg.

Moyna x

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Thanks for that Moyna, it must be very frustrating for you not to have a dx.

I have had brain lesions but none lately, even though I am having flare ups and my disability is progressing. It’s all very strange.

Wendy x

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From what I remember I have both, although most were located in the spine back in 1998. To be honest, I think lesions are a bit overrated, because it’s where they are located that causes problems and not necessarily the number.

It strikes me that if you are still having relapses then drugs that prevent them are a good idea. Perhaps an upgrade is in order?

This map of the spinal cord gives a good indication of where the areas of damage might be.

http://www.makoa.org/scimap.htm

I hope you get the answers you need.

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Hi Wendy

I agree with you, MS is very confusing and appears individual to how it affects us all.

I don’t think there are any fast rules as to where you have lesions, either brain or spine or both.

If you are having relapses, I wonder if you need to try a different DMD, to see if that helps, perhaps the neuro may suggest this.

Wishing you all the best, let us know how you get on.

Pam x

Hi Whammel, the trouble is that the relapses I am having are not getting better, had steroids and they didn’t do much good. I don’t belive the drugs I am injecting are having any effect but thanks for the link

Wendy x

Hello again Whammel the link doesn’t seem to work.

Wendy x

Hello Wendy,

Hopefully, this link will work ok.

http://www.aqavic.org.au/sci_facts/whats_sci.html

It certainly sounds like your current treatment isn’t working, so perhaps it’s time to consider a different and more aggressive DMD. No doubt your team will be able to advise the options available.

Thanks for the reply Pam, they’re not exactly relapses, more like flare ups of old symptoms and they don’t go away. I’m told I am Secondary Progressive so there aren’t any drugs other than Beterferon for me - not yet any how.

Wendy x

Thanks Whammel, I’ve been told (and realise myself) that I’m Secondary Progressive, so no other drugs are being offered to me. I have had ms since 1989, or thereabouts so I’m not surprised, walking is becoming more difficult and spasms all over the place that don’t go away but I’m not depressed about it, will try and carry on with Jelinek diet mainly (with exceptions treats on outings occasionally).

Thanks for the link.

Wendy x

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Hi Wendy. Like some of the others I only have brain lesions, as far as they can see that is. They think I may have some in my neck but as I have screws in there they can’t see them as my MRI is just a white mass. I thought if that was the case my body wouldn’t be as broken as it is but I’d have mainly cognitive issues. I suffer with both though.

My Neuro said that people with progressive ms can relapse where their symptoms worse and ease a bit and steroids can then be used with some effect but we’ll never go into remission. I hope you get the answers you want but as the others have said it’s a funny illness and we’re all affected differently with some symptoms in common but their severity varies between us too.

For that reason it’s a difficult thing to diagnose, if I hadn’t had a positive LP they would have left me with the dx of a spinal cord injury. That one little test made such a difference to my life as I got no help at all until I had this “label”. I feel for those of you in limbo from my experience of it.

Cath x

Thanks for your reply Cath, Sorry I have not explained myself very well. I do have a whopping great lesion down my spine, I saw it when I was first dx. It has caused me lots of problems with pain and ms hug ever since. I had lots of white spots on my head too. I’m not in limbo (fortunately), I’m just waiting for a definitive reason to stop taking Betaferon. I don’t belive it’s helping anymore, as progression is taking hold.

take care

Wendy x

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