Hi there I posted a question here 3 weeks ago when I had reduced feeling from my waste down (can’t feel pain or hot/cold)on one side, no bladder sensation etc. It was very helpful and made me phone GP who sent me to A and E. After 8 days in hospital they said I have CIS, and to see neurologist in 2 weeks. I’m not sure the 2 weeks to see neurologist is going to happen, as the hospitals start catching up from covid, but I have lots of questions!! It’s nearly 2 weeks now. My main question is, when I’ve researched CIS the articles mainly refer to brain lesions, and if you have CIS and abnormal brain scan, then (and I know this is very broadly speaking and lots of exceptions etc) you have up to 80%chance of converting to Ms. But hardly any mention of spine lesions! Does anyone know anything about this? I had a clear brain scan (no evidence of new focal abnormality seen) but spine there is a area of demyelenating plaque) in my thoracic scan. So first question is, am I in 20% unlikely to be MS or in the 80%! Also, lumbar puncture test for oligoclonal bands still not back, nearly 2 weeks after done. Is that normal? The test was done as inpatient which means they get done very fast. The other LP results were back in a matter of hours. One more thing, when symptoms get better, do they go through more sensory madness to get normal again? For eg, my leg felt so weak that I was limping and having difficulty getting around (according to docs it was not actually weak) , but now it just feels ice cold but stronger. Does this mean its getting better? Also, when I put anything cold on my affected side it would just be numb. Now it’s actually very painful… Again, does that mean it’s getting better? (or worse?!) Also 2 new things I didn’t have 3 weeks ago - I’m very dizzy, and walking like I’m drunk at times, and if I stand still I tend to fall backwards. And when I’m drinking or eating, it doesn’t feel like I’m closing my mouth. Is this all part of the lesion in my spine? Thank you so much in advance for any help you can give me. Those were just a few questions out of a thousand!! I’m sorry its a long read
Spinal lesions are far less common than brain lesions.
in fact the only person i know on this forum who has spinal lesions is Bouds, of course there must be others though.
I recognise what you say in the last paragraph about the 2 new things.
I used to look drunk and I wasn’t. It made me so angry when a neighbour was talking about me that I got drunk once to show her that there was no difference, My legs did their own thing, sober or drunk!
Standing still and falling backwards was a scary experience. I used to be the sort of person who was always dashing around.
then I started falling and it freaked me out. So instead of dashing I made myself stand still leaning on a wall until my feet knew that I intended to set off walking. It’s like when people have those satellite conversations, You have to wait for signals from your feet to reach the brain. There is a time lapse.
Hope this makes sense
Make sure that you are safe. falling is utter pants.
I know you want to get answers quickly! However you are best just waiting for your neuro appointment when the results of the full range of tests that have been done will be used to inform your diagnosis. It sounds as if you are on the fast track though - maybe not 2 weeks but not months wait. The criteria for MS diagnosis is strict - needs evidence of more than one occasion. So you may be stuck with a CIS diagnosis for a while until your body shows it is actually MS with another relapse, or shows over much longer time it is not MS as you have no further relapses.
The body is pretty good at trying to repair itself, and the central nervous system is, thankfully, very ‘plastic’ i.e. can build new routes etc if bits get damaged. Changes in sensation can be from the brain / neurons / myelin sheath repairing themselves. I’d think going from no sensation to prickling sensation is good news - they are reconnecting. Like any repairs some can be as good as new, some may be not quite as before.
Just give yourself time to repair. Don’t push yourself too hard - work with your body, not against it, and welcome any improvements as they happen.
Thank you both for taking the time to reply. Both very good advice. I know I should wait but every time I settle on waiting a gremlin in me gets the better of me and I start wondering And looking on Internet! I can see how long it’s taken alot of you to get a diagnosis. I can’t imagine what that was like. The Mri report said in differential diagnosis bit about it being Ms lesion or a tumour. As I’ve never really seen a neurologist after my scans (hospital doesn’t have a neurology ward) I don’t know if this has been ruled out or not. I suspect they’re happy it’s not that or they wouldn’t have discharged me from hospital?
I’d expect that any suspected tumour would be investigated as a matter of urgency.
Well I hope it would.
Ask your GP to chase it up for you.
I’m recently diagnosed (within the last Year) I had my first recognisable symptom(s) at the end of 2017.
I had a lesion on my spine and a few on the brain MRI. Like you, I was forever researching CIS and I was fixated on the 80% statistic, too! I found that I had so many symptoms at that time, and to be honest a lot of them might have been down to increased anxiety.
I would make a note of everything and discuss this with the neurologist. If your brain scan is indeed clear, then it’s possible that you have an episode of transverse myelitis ™. Without a doubt, if you are anything like me, you’re going to find it very difficult to put it to the back of your mind, but this could be the start of a very long journey and constantly worrying only made me miserable and anxiety driven.
Reading the word tumour in any context on the report would put me into overdrive! I wouldn’t assume anything, I would probably call my GP and try to find out if any surgical/oncology follow up is warranted or if they are happy to just wait for the neurology consultation.
I hope I have helped in some way! Sorry about any typos, sending from my tiny phone. Wishing you all the best.
Hi anon, I only have spinal lesions…cervical ad thoracic. All my main problems are below the waist.
I lost all mobility in my legs around 18 ish years ago…forgotten the real timeline for that.
My bladder needs an spc to function and bowels can be problematic. Movicol and prunes usually does the trick.
Thank you all very much for taking the time to reply to me. The hospital phone this morning and said the neurologist had looked at my notes and now doesn’t want to see me in 2 weeks, so am guessing he’s not thinking it’s a tumour which is good. Bouds, would you mind me asking what your first symptoms were? Everything refers to lesions in the brain and not alot about the spine and lesions (and the info there is, it varies greatly!!) X
My first lesion was in my thoracic spine as well. I could of drawn a line around the top of my ribcage from the point that my symptoms started / ended. When the docs started to talk about MS / CIS, i went into a tailspin and every little oddity was amplified. Are my ears ringing? is that a headache? It became difficult to know what was driven by anxiety and what was driven by the disruption of nerve pathways. Its a slow process i am afraid going through the NHS but dont let the nuero palm you off. Ok, so they dont need to see you in 2 weeks but when is your appointment? the waiting list in my service was like 9 months! i kicked up and managed to get it moved forward. You have to be your own advocate it seems. Good luck
Hi Bouds, I’m so sorry I must have been reading another message instead of yours, as just looked at your message so please ignore my message to you. I’m sorry you’ve lost mobility in your legs, and a long time ago too. I’m amazed that this forum is so positive and helpful to others when everyone’s got so much going on themselves. X
Hi oneinthree, thank you too for replying. My appointment is 4 weeks away. Yes I too have a line, but it’s only on one side, and ask the symptoms are below it. Mine is in the thoracic but
Hi Beth, Your story sounds a little like mine (diagnosed 5 years ago after lower limb numbness; MRI showed both brain and spinal chord lesions (T11/T12 and every bit of C spine save C4)). I was terrified at the time. I was ultimately diagnosed with RRMS later that year (1 new brain lesion on a repeat MRI, no new symtoms). I’ve not had any new lesions since then (and my existing lesions have shrunk). I’ve also not had any progression of symtoms/relapses. Whilst all of our stories are different, I remember scouring the board for reassurance and hope when I was going through diagnosis. I’m not on this board very often anymore, but was in a reflective mood as I ve just has my annual MOT with the MRI so popped in, but happy to get in contact if you want to talk. Kat x
Hi Beth, my very first symptoms went like this;
a heavy left leg when walking…felt like I was dragging a tree behind me
this was followed by the left foot not picking up and stumbles and falls ensued daily
fatigue…on the fatigue!
Hi Carol - I also had only 2 spinal lesions at diagnosis!
Hi Kat, Thank you for replying. Great to hear you’ve not had any more relapses and symptoms. I hope the Mri shows no further lesions for you. Is a very kind offer to get in touch, very much appreciated Bethx
Just one more question, if anyone is reading… So far my scans have only been looked at by a general consultant radiologist. Does anyone know if their own scans were looked at by a neuroradiologist? Is it something you’d recommend to push for? Many thanks! Beth x
Probably something to ask your nuerologist at the upcoming appointment Beth. I know my scans were discussed at a multidisciplinary meeting after my first incident but different trusts probably have different protocols. If you’re not happy with your nuero or feel that he is leaving stones unturned then you can always seek a second opinion. It’s worth finding out whether he / she is an MS specialist. Mine wasn’t and I think he made some bad calls but at the time I didn’t know any better. Glad you are getting seen relatively quickly, I know the wait can be torture. Remember to write down all of your questions before hand as the appointments tend to fly by
I have had lesions in the C-spine - I thought they were common.
Hi there, Since my last question I’ve seen the neurologist. I still have clinically isolated syndrome as only evidence of one lesion. He says risk of ms low as brain scan clear. I have developed new symptoms on my other side so he’s sending me for another scan, which he said might not be quick. He said in meantime, if I have any new symptoms which I think may be a relapse then to go to A and E where scan etc will be done quickly he said instead of waiting. So I wondered what could be classed as a relapse? For example, one of the new things is my knee going numb, and foot. Would that be a relapse? It doesn’t seem like an adequate reason to turn up to A and E for. Have looked on internet and seems a relapse could be anything from pins and needles, to major stuff like not being able to walk. Any help would be appreciated, I should have asked neurologist a bit more about this. Beth
Beth, i think that ‘relapses’ are very difficult to define. I probably meet the MS Trust criteria around 20 times a year but i generally put it down to flunctuating symtoms. My own experience, having established lesions at T5 (first one) and then later at T9 and T11 is that numbness, pins and needles etc can come and go. I certainly found that with my first lesion and then everything stablised after 6-8 months and i had a care free 3-4 years. Your experience doesnt sound disimilar to my own although i did have some ‘non-specific’ white matter changes in the brain which were considered to be in the borderlands of normal. At the end of the day i was happy to be given a CIS diagnosis and then just basically forgot that it ever happened. Hopefully you can do the same and be ready to act should anything flare up in the future. Are you happy with your neuro and is he / she an MS specialist. If not then after your next scan it probably wouldnt hurt to get a second opinion as this could give you extra comfort that you have turned every stone