I have been experiencing odd symptoms for the last 3-4 weeks. Started with a pins and needles type sensation in my foot, this then travelled up my leg, then affected my arm and hand, and then half of my torso( all on left side of my body). I had my MRI scan yesterday day which has confirmed transverse myelitis (inflammation of my spinal cord) and I am due to see my neurologist tonight for diagnosis. I have 2 very young children (aged 2 and 4) and am feeling pretty scared. I am in full time work (and have for 9 months been in the job of my dreams). I also have to do a lot of driving for my job.
Iām trying not to jump to conclusions about diagnosis, but all my symptoms are in line with MS, and Iāve even had speech issues last week, as well as imbalance (falling for no apparent reason) as well as my left leg āgiving wayā
My symptoms have subsided and all I currently have is a ādullā sensation at the bottom of my left leg, and foot. The MRI picked up an āactiveā area of inflammation that requires treatment. (Steroids were mentioned)
Iād like to hear from anyone who is in a similar boat, or those who started off on this journey with symptoms similar. Also, whatās the process for DVLA and first hand experiences of this please x
I have similar symptoms to you. The pins and needles in bottom of right foot that went numb and then the whole of my right side went numb too. Having a few problems with my right hand too. I have fallen a few times too. This has all happened over the past 7 weeks and I am only just getting my head around the idea that I could have ms. So scary. I am waiting to have my mri etc. Please let us know how you are getting on.
Hi,
Sorry to hear of the symptoms you are having.I too was diagnosed with āprobableā transverse myelitis after an MRI of my cervical spine in Feb, which showed a single lesion. My symptoms to that point had been numbness/tingling in my hands and fingers. Iād also had some minor weakness/cramping in my right leg and foot but hadnāt thought much of it. Since then my symptoms have progressed to tingling in legs, burning feet, Lhermitteās sign. The hand problems have been going on for almost 5 months now.
I have since had a brain MRI that has shown several lesions consistent with MS, but at present because they only have the baseline scans there is no radiological evidence of attacks having occurred at different times, so for the moment I have a diagnosis of Clinically Isolated Syndrome (CIS). Iāve been told there is a high likelihood of further attacks, which would probably lead to a diagnosis of MS - but there is still a possibility that this is a one-off. So itās just a waiting game.
As my hand symptoms were so persistent I eventually agreed to try a course of oral steroids - but I had quite nasty side effects so I think in future I would have to be suffering a lot more to entertain the idea again (plus they didnāt make any noticeable difference to my symptoms - though apparently they donāt always, anyway, but they might reduce the length of an episode / relapse).
The trouble is that everyoneās experience is different and although presenting symptoms can look similar between people, there is no typical pattern. Iām telling you my experience because you asked but honestly itās probably not that helpful!
I have a friend who was diagnosed with TM about 10 years ago who seems to have had much worse and more widespread tingling than me in his torso and lower body, but he has always had clear brain MRIs and has had no further physical problems.
I also have 2 children - 7 and 5 - I work full time and am the main wage earner. So I can empathise with that aspect - it is a very worrying time and makes you think a lot about the future and what you really want from life. But (and Iām a great one to talk!!) until we have some more definite answers, I think all we can do is take each day as it comes!
I donāt know much about DVLA - I think you only have to tell them if and when there is a definite diagnosis of MS. I havenāt heard or read anything about the need to disclose TM. Unless of course you feel that your symptoms are affecting your ability to drive safely now, in which case there might be some duty to tell them and they may request a report from your GP - but I have no first hand experience of this.
Iāve just noticed that you said you were seeing your neuro on Weds - what did s/he say?
Best of luck
S
Hi,
Regarding the DVLA. I had transverse myelitis and when I rang the DVLA to check, they said yes it is on their list of āconditionsā that you need to inform them about. They said I was OK to drive whilst they were investigating, providing my GP was happy for me to do so. Eventually (months later) they got back and said no changes were necessary but to inform them if my āconditionā changed, I also had to specify āDVLA awareā on the medical part of my insurance.
Hope this helpsā¦
Transverse Myelitis is not actually on the official list of reportable conditions.
You can read the full list here:
Geoff
Fair enough, but when I rang they clearly said that Transverse Myelitis was a condition I need to inform them about.
Perhaps it is classed under the general āSpinal conditions and injurysā category:
Where it states:
āYou must tell DVLA if you have a spinal condition or an injury to your spine.ā
Sounds like TM to meā¦
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