Hi all, When I hadn’t first ms like attack a year ago, I haven’t had an official diagnosis. My neurologist said it was undiagnosed, but if it was going to be anything it would be ms & he only wants to see me again if I have a weakness in a limb or blurred vision in one eye. But when I went back to my doctors he said it had been diagnosed as transverse myelitis. I’ve looked this up and I understand that transverse myelitis is inflamation that crosses both sides of the spinal cord. I was left with two lesions on my brain after this attack. I don’t want to sound stupid but where is your spinal cord exactly? & what does crossing both sides of the spinal cord mean exactly? Do all people who have one attack & not get an ms diagnosis get classed as having transverse myelitis?
Hi app666,
Transverse myelitis ™ is inflammation inside the spinal vertebrae (let’s just say spine), and the spinal cord runs down the inside of the spine. Nerves run off the spinal cord to control things like arms, bladder, legs, feet. The transverse bit is when it affects right across the cord.
Let me take a guess - your symptoms were a tingly feeling, followed by numbness in your feet, which spread up your legs, and maybe further, and then went away. Sometimes the lesions in the brain are not enough to diagnose MS. A neuro may call for a lumbar puncture to help in diagnosis, or may just wait to see what happens.
I went nearly a year before the Dx became MS, and well over 18 months before the first relapse. The thing that you really want to look out for, is the time to the next (probably first) relapse. You qualify for DMDs if you have two events inside two years (and you can still walk), and you might want to argue that if you have a relapse, then you should get a choice of DMD. The general view is that the earlier you start on one, the better.
My first Neuro said:
“If anything happens (fatigue, pain, vision problems, whatever), and it lasts more than 24 hours, make a note. If it lasts more than a week, get on the phone! When I did get on the phone, he had left the week before! The MS Nurse called me back within hours, and had me in for a session with the locum consultant in two days, and for steroids within 4 days.”
One thing you might want to watch out for is “Babinski’s sign”. This is when a big toe tries to turn up, or back, of does not rest on the floor when you stand in your bare feet. It can be particularly obvious in bed when you lie on your back. This is an indicator of spinal problems.
Hope this helps
Geoff
Hi Geoff, Thank you for taking the time to reply to me. I will try to keep it brief but mine attack was a bit different maybe not the norm. I had recently had a bad cold/virus which I hadn’t fully recovered from. Whilst still not 100percent I returned to work after a couple of days off & had a weak feeling travel up both my arms, then my speech wasn’t right, I was finding it hard to get my words out then my right hand wouldn’t work properly eventually becoming completely disable from the wrist & the whole of my hand, I couldn’t move anything for about 10days, whilst I had the weak feeling in my arms my co ordination was off when typing on the keyboard. Eventually had MRI which came back showing inflammation on my brain the size of a cherry, the neuro initially thought it was a tumor & I was going to have an operation! Then neuros looked at in in Oxford & they thought it looked like inflammation & ordered evoked potentials & a lumbar puncture. Evoked potentials were abnormal but I do not know to what extent & the lumber puncture was inconclusive. I was left for a month, had another MRI & was told I was left with 2 lesions close together that were smaller in size. I was told I may never get ms & to get on with my life, obviously if I get blurred vision in one eye or weakness in a limb then it would be ms. My right hand completely repaired itself, had no steroids. Since then I am having all sorts of horrible symptoms but they don’t justify anything my neuro is interested in. My speech was fine until about may but it’s up & down good & bad days, neuro said it’s because the inflammation was in this area originally, I have had tinnitus constantly since may but neuro not interested, I see dark shadows & a dot when looking at bright backgrounds but not interested, have bad back/leg ankle pain but neuro says this is sciatica, eye pain etc etc! My neuro has been written to over 6 weeks ago because I have requested to either see him again or someone else. Sorry this has been so long!!! Maybe I’m not a normal case of transverse myelitis! As you can imagine I’m finding all of this really tough & frightening. I’m 31 & what a lovely bday present I got a few weeks after my 30th! I hope you are well, thank you for your advise x
Hi app666,
The lesions in your brain are quite separate from the transverse myelitis, which only affects the spinal cord.
By “quite separate”, I don’t, of course, mean they are just coincidence - undoubtedly whatever caused the brain lesions caused the TM too. But they are two separate consequences of the same attack.
The thing with MS is that to satisfy the “multiple” bit, it needs to be characterised by at least two locations (yours already is) AND at least two attacks. At the moment, you appear to have had a single “MS-like” attack, but some people never have another. Unless or until you do, it cannot be called MS.
Even if it’s only an isolated attack (usually called Clinically Isolated Syndrome, CIS) it has clearly caused nerve damage. Recovery from this may be (a) slow, and (b) imperfect, which explains why you’ve still got yucky symptoms, even after the main episode has passed.
The cold/virus in the run-up to it may or may not be coincidence. It could indicate the episode was related to the virus, and so not MS at all. However, MS also tends to flare-up in response to the common cold, and other infections, so it’s also possible that if you had early, undiagnosed or “latent” MS, the virus might have brought symptoms to the fore.
Even if you don’t have another attack, that you’re aware of, sometimes it’s worth scanning again, in a few months, to see if any new activity is evident that way. I was diagnosed that way, even though, to the best of my knowledge, I hadn’t had a further attack, the scan showed I had.
Tina
A spinal lesion is much more likely to have caused your arm symptoms than the two smaller lesions in one side of your brain. The fact that you weren’t told this at the time is plain ridiculous 
Having both arms affected means that you must have had a lesion that ran across both sides of the spinal cord because the left side of the cord controls the left side of the body and the right, the right. To be diagnosed with transverse myelitis, the lesion also has to be at least 2 vertebrae in length. I guess you had a spinal MRI? If not, then the neuro must be going on symptoms alone somehow.
This focuses on spinal nerves rather than the spinal cord, but hopefully it will help: http://mississaugachiro.com/interactive_flash_spinal_nerve_chart.php
If you’ve never had a spinal MRI, then you might use this to get a referral to another neuro or MS specialist. No need to ask the current neuro, just ask your GP. It doesn’t seem right that your new symptoms are being dismissed out of hand - it wouldn’t hurt to have a new MRI at least.
Good luck.
Karen x
Thanks Karen & Tina. I’ve only had 2 MRIs, the last one was a year ago. Don’t want to sound stupid but I’m sure they were only brain I had the dye injections both times. That’s why I was under the impression that I thought they could maybe see the spinal cord from the brain MRI & thats how it was diagnosed as transverse myelitis? The issue I had with my arms was just a sudden feeling of weakness that travelled in a wave up both arms, it was a weak feeling but my arms weren’t actually weak if you know what I mean. I also had a ct scan on the whole of my body (would that show spinal cord?) I remember the neuro saying that you have made a very good recovery so maybe there was something on my spinal cord at the time but it repaired and disappeared? He also said an infection or virus could bring it back but it was highly likely this was a one off. When I last saw him in sept I actually asked for another MRI but he didn’t feel it necessary? He’s a specialist in Parkinson’s I believe. I asked at the time, do I need any treatment & he said no, because it’s got better by itself. When I told him I’m struggling with my speech again (because it was ok for 6months after attack) he said if you get hot etc he said it could play up, I said is that because it’s ms related he said no, it’s because of where the inflammation was. he has 600 ms patients on his books apparently even though he doesn’t specialise in ms. I know that speech is a motor function, can I expect more a recovery after a year? It was good but since got worse? It does concern me because speech I know is a motor function & I’ve heard to have motor functions rather than sensory issues can mean a not so great outcome? I have no problems with my thinking & thoughts in my head, it’s getting them out of my mouth that I struggle with, I know what I want to say but the thought of trying to process it in words is a little different, nothing flows correctly? So after a year do you think there could still be some recovery? I wonder why it was ok, then changed again… Thank you for listening to me! X
There is another point for you to think about.
You should have had a copy of the letter from Neuro to GP. Hence, you should not have had to find out from the GP that the Dx was not what you had been told. This is in the NHS Constitution. If you take Karen’s advice, and ask for a referral to another Neuro, this may well be good grounds for doing so.
Geoff
Speech is a complicated function and involves lots of different parts of the nervous system. Even though it involves parts of the motor system, it’s not really the kind of motor function that people would think of in terms of worse outcomes so please don’t worry about that.
A CT scan might show up a lesion in the spinal cord, but MRI is much better at detecting MS lesions.
If I were you, I would not be comfortable with a diagnosis of transverse myelitis without an MRI scan of my spine. I would be equally uncomfortable seeing a neuro who doesn’t copy me in on GP letters, who dismisses symptoms that may have a neurological origin (e.g. your tinnitus) because they don’t fit with some weird idea of what is important, who ignores a request for a new appointment or referral, and who specialises in Parkinson’s Disease.
I think you need to ask for a second opinion from an MS specialist. I think you have more than sufficient grounds to justify this.
I would say that some of your current symptoms may have a perfectly reasonable, non-neurological explanation. The shadow and spot in your vision could be floaters (but have it checked by an ophthalmologist, via your GP) and it really could be sciatica, but the reappearance of your language problems is harder to explain, as is the tinnitus. It’s true that when we are tired, ill or hot, a lot of old symptoms reappear, but these would not last long. It is more likely, in my mind at least, that there is a bit of new inflammation in that old area - this is not uncommon. The fact that you recovered well from it the first time suggests that you will again, so stay hopeful and keep practising! It would definitely be worth asking your GP for a referral to speech therapy. They deal with all sorts of speech problems, including the type that you describe, so they will be able to help you.
Time to get your GP on your side, and a new neuro!
Karen x
Thank you Karen, about 6 weeks ago my gp wrote to the neuro & said that I want to be seen again either by him or someone else, I am still waiting a response or acknowledgment to that request! You know how it is, I think if my body & mind are in the state their in now I fear thinking about the future, and progression, I’m worried I won’t be able to speak for a start! X
Thanks for an informative reply to the original posters question. If I had known big toes turned up with feet flat on the ground is an indicator for spinal problems I would have mentioned this to the neurologists that I’ve been under the care of.
My family always wonder and ask me if I deliberately have my big toes up. It’s mainly the right foot big toe that is pointed up but at times both can be pointing up.
Hi fjear
I found out about Babinski’s sign some years after I had noticed the big toes turning up (and three years after I knew that I had inflammation inside the spine. In fact, it was another poster here who just mentioned it in passing, in the middle of a long list of diagnostic tools (might have been ggood, but I am not sure), so I looked it up.
In my case, it is the left toe that turns up more, and my left leg (and now left arm) that present problems. I have a Neuro appointment in three weeks, and I intend to ask if it is in my notes (or maybe I will ask the question another way (new Neuro, so we will just have to see how it goes).
Geoff
Hi Geoff thanks for the additional information I have an appointment with my neuro on Thrusday will definitely mention the pointed toe to him.
One thing I’ve never had is a full spinal scan, I guess it would be a good idea to have one but I’ll let the consultant make the final decision.
Hi fjear,
I have said this sort of thing before, but the approach is worth repeating:
You mention that you have this big toe that has started to stick up.
You have “been told by someone on the MS Forum” that this means spinal problems.
“Is this true?”.
It makes things easier for the Neuro to think about a spinal MRI - and it could be much better that asking for one.
Now you need to think about whether you have any other symptoms that would point to spinal problems. Numbness, tingly feet, loss of sensation, and things like that. A full sensory/tactile exam would take the best part of an hour, the short version would be less than 15 minutes. Each could identify where in the spine the problem is. The MRI shows what it is and roughly how bad it is.
Good luck for Thutsday.
Geoff