hi to everyone. I have had odd sensations for the past 2 1/2 months. started with numb right forearm, moved to all of arm within a week, then within 2 weeks numbness/tingling all down right side and left foot. brain mri came back normal then had cervical + thoracic mri which showed single lesion at neck level. neurologist says cannot give diagnosis of ms with a single lesion and has given diagnosis of myelitis. then discharged me from his books and said see how it goes? when i google myelitis it comes up with transverse myelitis, is this the same thing as it looks kind of scarey andnot thesort of thing iwould have been discharged for. am really confused, not particularly scared but frustrated. any ideas/information would be really welcome.
thank you and best wishes
I think transverse myelitis usually involves a large lesion across the spinal cord and often has severe effects. TM can develop into MS. I imagine you don't have polio, but acute disseminated encephalomyelitis (ADEM) is another thing that is sometimes confused with MS.
Do you still have the odd sensations? If you have had only one attack and one lesion, then it would be hard for them to dx you with MS, but it could also be considered CIS (clinically isolated syndrome). You might also want to look at the health pages (yellow icon in upper right), especially the ones on the McDonald criteria used for dx'ing MS.
thank you for your comments. yes i still have the same sensations and i get really cold also, mainly my feet and upper body. i have gone from someone who does not feel the cold, even in the middle of winter i wear a t shirt and no socks, to wearing socks and jumpersall the time, even wrapping a blanket around me in the house sometimes. am not really in any pain, just feel uncomfortable with funny sensations. sometimes feel as though i am wearing cold, wet clothes, its not nice.
i think the myelitis dx isjust a general 'inflamation of the spinal cord' if you google 'define myelitis'
the waiting to get better is frustrating
what you describe sounds like an episode of Transverse Myelitis. Usually TM is a one of single episode, it usually only reoccurs with MS or as a secondary thing to other auto immune things like Lupus etc.
With TM the doctor's don't give disease modifying drugs but they just treat the symptoms. If you have a major attack they sometimes do plasma exchange or give IV steroids to try and reduce the inflammation in the spinal cord but there is not much they can do.
Gabapentin can sometimes help with the sensory sensations and you can get meds for pain etc. It can take up to two years for recovery to occur from an episode of TM and you might find that you will always be left with some weird sensory things and pain etc. Everyone is different, it depends where your lesion is located and how far it goes across the cord. There is different types of TM as well, you can have acute, sub acute. Some peoples symptoms come on within hours and others gradually build up over weeks.
Some doctors say that what you have after 3mths is what you will have to live with but it can take up to two years for the cord to recover. I find that I get symptoms now when I get tired, sick, or too hot. Transverse just means across, so a lesion across your spinal cord.
Yes if you read about a full blown attack of TM it does sound scary but obviously this is not what you have had and it would be unlikely for TM to reoccur (it can but it's rare) although sometimes TM can be the beginning of MS and then in that case people go on to develop lesions in their brain.
I imagine your neuro would want to see you again if you feel like you have are having another attack but he must be confident that it's not MS. Although it is a scary time it is good hopefully that this is an isolated attack and hopefully you won't have subsequent attacks.
Has your neuro organised physiotherapy for your arm etc.? I understand your fear, and I can relate to the sensations that you are talking about.
If you type in Transverse Myelitis in the search I think there are heaps of posts from others who have had this diagnosis (including myself).
Best wishes, I hope you are on the way to recovery soon.
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