Hi,I was given a preliminary diagnosis a few years ago. Symptoms weakness and weird sensations in left leg. Had spells of overwhelming fatigue since but until recently that was it. Now I’ve got hand tremors and am generally more tired, and have neck/eye pain. Could TM strike elsewhere in CNS years after initial diagnosis?
Transverse myelitis is only ever in the spinal cord, so I’m not quite sure what you mean by: “elsewhere in the CNS”.
Yes, in theory, you could have another episode of TM at a different point of the spinal cord. But if you had a demyelinating attack anywhere else in the CNS (brain or optic nerve) then it wouldn’t be called TM.
If you have two separate, confirmed episodes of demyelination, regardless how many years apart, it’s likely they would stop thinking in terms of “isolated episodes”, and would be considering a common cause. I have to say, MS would certainly be one of the things they’d be looking at, but some other conditions do cause demyelination. Also, we do not know, at this point, whether your new symptoms are definitely caused by demyelination. It’s possible, of course, that this is something coincidental, and nothing to do with your earlier attack of TM.
I wish I could tell you it’s nothing, and sure to be unrelated (it still might be!) but if you haven’t already, I think you do need to see the doctor, and get this investigated.
All other things have been ruled out, neurologically, or so GP said last week after reading all letters from neuro and test results. I’ve been passed from the MS Nurse I was referred to years ago to a neuro nurse, and neuro is hard to reach,
Sick of being in limbo. Had initial MRI when symptoms began, another a couple of years later which showed ‘no major changes’.Neuro wouldn’t expand on exactly what that meant, in terms of there being changes but not major ones.
I’m under the impression TM only recurs at initial lesion site?
What I meant in initial post was that I’m not sure hand tremors would be caused by spinal cord lesions, unless they’re quite high up. This is because TM affects the area(s) below lesions.
(There seems to be a post missing from Mrs. Chicca somewhere - perhaps it will turn up later!)
I do not think there’s any reason you could not have TM more than once, at different parts of the spine. I’m not saying it’s common, but it does not “know” what has gone before, so how could it possibly “know” not to do it again?
The confusion might be because if it happened again, at a second site, it would probably no longer be called transverse myelitis, as I’ve said.
TM is almost the name of a symptom, rather than a complete diagnosis. If it never happens again, then it would stay at just being called TM. But if it recurs in a different place, they’d probably stop calling it transverse myelitis, and be looking at what condition causes TWO separate episodes of it.
I agree with Mrs. Chicca (in the post that’s presently invisible to me) that problems with the upper body (arms) suggest the problem is either very high in the spinal cord, or not in the spinal cord at all. Inflammation of the spinal cord only ever causes symptoms below the affected point. And spinal cord inflammation can NEVER cause problems with your eyes.
Vanishing posts eh? I had this problem a few days ago too.
I’d contact your neuro as a new MRI may be necessary, or maybe neuro can firm up diagnosis based on existing lesions and new clinical symptoms.
Hi I had a lesion on cervical spinal cord and was told a possible cause was myelitis. I had left leg numbness and right leg weakness and fatigue. I felt a lot better after 6 weeks then 9 months later a gradual decline in walking was seen with progressive spasticity/weakness. 3 years on I have a spastic hemipelgic gait and spinal lesion has gone. Still no real dx althougth one neuro thinks radiation damage from treatment I had years ago. Another neuro thinks I just got progressive problems from the myelitis.
Hi Moyna, I’m reading your post almost in shock as this is exactly the same as me. I presented with left leg numbness, sensory issues in the left leg and foot drop. At the time, I also had very low vitsmin D and B12 which compounded the physical side of things and caused huge fatigue and general downness. First neuro told me I was ‘likely to develop MS’ as a result of my episode plus spinal MRI showed a lesion at d11/12 and one at he conus. Brain MRI showed 2 white hemisphere soft matter lesions (!) suggestive of demyelination. Second neuro told me you can’t have a lesion on your conus and that the brain lesions were so small and not in an ms area. He said as I’d just had one episode and the only questionable lesion was in my spine at d11/12 that I had Transverse Myelitis. This was 9 months ago (2nd neuro) but first episode was 13 months ago. Since b12 and d were corrected April onwards I felt fab. However, mid July I started to get weak right leg, fatigue and spasticity and general walking decline. Right Achilles’ tendon is tight (neuro wants to give me Botox to ease it - declined it at the mo). Am shocked at how rapidly my walking has declined between April and now and very scared. I was fine up until mid July the bam very rapid decline. This mid July decline I wandered if there were 2 contributing factors - the excessive heat (hit between 28-32 in London) and my b12 had dropped to below 300 again. Since my b12 regained, I still found my walking had declined. My b12 regained at the beginning of September so I was very keen to try a decent length walk to really see the conditioning of my legs but then have been struck with a really bad ear infection that has me staggering around like a drunkard and has caused the first presenting left leg to stiffen and the right leg to weaken even more - so again, I can’t get a true picture of the walking decline. I’m not sure if the right leg symptoms in mid July are a new episode and therefore the 2nd episode in a different area and therefore confirmed MS or whether those symptoms have arisen due to the low b12. Neuro stated he wanted to replenish my b12 before making any decisions. When my levels got back up at the beginning of Sept I felt great, right leg felt loads better (still stiff Achilles thought) but this lasted 2 days then I got the ear infection. I’m not seeing the neuro till Nov and am really lost as to whether the right leg stuff and walking decline and spasticity is the 2nd episode or just down to ?12 deficiency and as to whether I’m having a relapse or a flare up (just don’t know the difference) in my left keg due to this darned ear infection??? Either way - guess more will become clear when the ear infection slings its hook and I’m able to really see how my legs However, your post reads just like my journey and I’m still at transverse myelitis until I see the neuro. I’ve read so much about b12 deficiency mimicking ms that I’ve almost convinced myself that that’s what it was especially since symptoms arose every time I dropped below normal levels but the walking decline coincides with that so who knows?? Any idea what the difference is with a relapse and a flair up?? BTW regarding your hand issues my neuro told me that I could expect upper body issues as much as leg issues due to my lesion placement at d11/12 - not sure if Tina would be able to ratify that but that’s what my neuro stated & my understanding is that it remains as TM whilst it remains as one clinically isolated episode but on the 2nd episode it becomes confirmed MS retrospectively making the first episode the first ms attack. However - wiking TM it states that a lesion at d11/12 cause issues with lower limbs but those at L1 S5 can cause issues in upper or lower or both. Now remember according to my neuro you can’t have an ms lesion there ( go figure). I understand that your spinal lesion has gone but are they saying that your current hermipelgic gate is potentially nothing to do with TM or MS and is a result of previous radiation??? Where does your neuro now classify you? What do you think your walking decline is down to? Sorry for the long post but I was caught by how much my journey mirrors yours. Rosey x
Hi ya. Just to throw something else into the mix… I have been diagnosed with tm and my right hand and wrist and fingers completely stopped working couldn’t move them at all. No leg issues, just co ordination in arms, speech messed up and a dead right hand/wrist. Was told at the time i was left with two lesions on my brain. No diagnosis of ms yet.
I’ve been wondering since yesterday… if you’re dx with TM, and have new neurological symptoms years later, can you be DX with MS based on that? If everything else has been ruled out by tests? I’m wondering if OP should be requesting this info from neuro/nurse/GP.
I think it certainly could result in conversion to an MS, but not that it automatically would. It would depend how clear and unambiguous the new evidence was. It would be possible to be diagnosed only on new symptoms (in addition to the known demyelination years ago), however, I think most neuros would still prefer the added certainty of one or more out of MRI, visual evoked potentials, or lumbar puncture. So if there were new symptoms only, but MRI didn’t reveal any new damage, for example, it still might be difficult to convert to a confirmed MS diagnosis. It would, of course, be strongly suspected, but if the original poster has (had) an MS nurse, that suggests it already was! Everything really depends on quality and quantity of evidence - and, as you say, ruling everything else out. It’s just possible, albeit unlikely, that the new symptoms have nothing to do with the earlier attack, and are something quite different. So they’d need to be very cautious about putting 2 and 2 together and getting 5.
Sorry, it appears I’m leaving out whole words. They are in my head, but not coming out in my typing. I did mean an MS diagnosis, not “an MS”.
True. The whole world of neurology seems confusing from posts on here, not many clear cut answers. I sometimes think those of us with neurological conditions would make good neurologists, we have experience rather than having read books x
I started with a dx of TM back in October 2010 but following a relapse late dec 2011 I had another MRI jan 2012 and was dx with MS 2 months later after lesions appeared on brain but it did all start with 1 lesion on spine which affected my right leg and lower chest