Hi there I read something recently that mentioned spinal ms rather than the usual rrms, , spms , ppms has anyone heard about this? I’ve got various things wrong with my spine fusions in my c spine, slight scoliosis, stenosis in lower spine and also a syrinx, any of these could be the reason for my weak leg and foot drop and I’ve been wondering if I would be better to see a spinal specialist rather than a neuro, any thoughts anyone?
Hi,I believe that some people can have MS and only have lesions in the spine,so yes,‘spinal’ MS can exist…By spinal specialist,do you mean surgeon?I would go for a neuro consultation first.
Hope this helps.TC,Brenda.
Hi,
I don’t think “spinal MS” is a different disease. I think most people with MS have one or more spinal cord lesions at some point, but a small percentage have lesions ONLY in the spine - at least at first.
There are also some other diseases considered to be in the MS spectrum - i.e. related to MS, but not called MS that cause lesions only or mainly in the spine.
In either case, if it’s a demyelinating disease, it’s still a neuro who would look after it. They deal with the whole central nervous system (comprised of brain, spinal cord and optic nerve), not just the brain.
As you have quite a complicated medical history already, with quite a few things that, as you rightly say, could cause symptoms similar to MS, I would have thought it’s your GP’s decision which discipline should have first crack (no pun intended) at working out what’s wrong.
By coincidence, I was referred to a neurosurgeon (N.B. different from a neurologist) initially, as I was suspected of having a slipped disc. So a neurosurgeon - which is probably what the “spinal specialist” you mention would actually be - should be able to assess the structural integrity of your spine, and decide whether the existing known issues could be causing your symptoms, and if so, whether there is any viable treatment.
But any nerosurgeon worth his salt should also be able to tell if the exisiting abnormalities could NOT adequately explain your symptoms.
My neurosurgeon was very astute, and could see straight away there wasn’t any slipped disc, nor any other structural anomaly that could be causing spinal cord compression. However, he did spot something very subtle, which I now know to be spinal cord inflammation, and referred me to a colleague for a second opinion. That colleague was an MS specialist, and I went on to be diagnosed with MS, after they also found six lesions in my brain. So in a way, I think it’s luck of the draw which you see first, and whether that is the right first guess. Inflammatory processes (like MS) in the spinal cord can present with very similar symptoms to more mechanical problems, like a slipped disc, or stenosis.
I am sort of guessing from your question that you’ve had a brain scan, but it was clear? Or have you not had a brain scan? If you did, and there were lesions, that would show clearly that there was more going on than the fusions, stenosis, syrinx etc.
Tina
My very first symptom was a creepy crawly spinal sensation…I was diagnosed before the general use of MRI scans but strongly suspect that lesions would have shown in my spine first.
Also as soon as I get fatigued that is the symptom that drives me crazy, even years later it is like mice running up and down my spine, or spiders maybe.
So I agree with what others say…basically yes you can have spinal MS but it is all part of the same issue.
Good luck with your referral whichever way it goes.
Ell
Sorry I wasn’t very clear with my first post, I do have rrms and was diagnosed from a brain MRI, I’m not on any DMD’s I take LDN, the reason I was asking about spinal specialist was because I don’t have a lot of help from my neuro as I’ve turned down DMD’s a couple of times. I just thought with having so many problems with my spine someone who specialises in that might look at the bigger picture, thanks for all your replies Juefaz
Hi Juefaz,
If you have a confirmed diagnosis of MS, I think you’re definitely in the right camp already, with the neuro, and there’s nothing a “spinal specialist” would be better equipped to deal with. They could certainly look at the physical abnormalities in your spine, and see if there’s anything there that might be contributing. But if your problems are essentially caused by MS, there’s nothing a spinal specialist could do about it. They’d be looking for things that might potentially be operable - MS isn’t.
I have also turned down DMDs - with my neuro’s blessing - so not contrary to medical advice, at the moment. You’re not being punished for saying no; unfortunately, it’s just a fact of life that they don’t have much else in the armoury, apart from symptom relief. Switching to a different specialism wouldn’t mean they’d come up with fresh ideas that neither you nor your neuro had thought of. You’d still be stuck with MS, and your treatment options would still be limited to DMDs, or making do as best you can. In fact, if you changed your mind, a “spinal specialist” (i.e. surgeon) almost certainly wouldn’t be licenced to prescribe DMDs, whereas your existing neuro probably is. So better to stay where you could still get them if you wanted, rather than switch to someone who wouldn’t be able to do it, even if you said yes.
Tina
Thank Tina yes you’re right I suppose, I’m just constantly looking for alternatives, I think it’s just because I don’t feel listened to by my neuro he doesn’t seem to piece it all together, I know I have ms and I know there are only DMD’s for it at the present time which I don’t want to take. I take my LDN which is great and I had ccsvi 3 years ago which helped certain symptoms, I’m just waiting to try fampyra to see if that will work for me but I don’t take any other drugs, I also see a chiro twice a month which has also helped a lot with my spinal issues so I’m trying everything I can and paying for it all too!! Just wish the NHS could give me something ha ha!
I sympathise with your last post as despite many promises of physio, none has ever materialised so I pay for a chiro too. I credit him with getting me walking properly again. I think the NHS’ new motto (apart from A&E) is ‘ignore them until they either die or get better and don’t need the treatment’ 