So I had my first neurologist appointment last Friday and have been referred for MRI scans of brain and C-spine. His diagnosis is presumed mild cervical sensory transverse myelitis
Does anyone have any experience of this? I have had altered sensation, starting in my lower abdomen then spreading upwards, since beginning of December. Consultant said symptoms could take several months to improve 
Scans are to look for evidence of inflammation or demyelination
thank you
Hi, I have only heard of this condition affecting people here, once or twice.
I understand it can be very painful.
Take care.
Boudsx
I know a lady who has TM and it appears to have an array of symptoms.
I see her at the MS Society meetings.
Try attending your local branch where you could ask if MS and TM are linked.
good luck
carole x
Hi
My first episode was labelled Cervical myelitis. It did take a few months to resolve. My MRI showed a lesion on my c-spine and couple on my brain. I was later diagnosed with MS. I’ve added a helpful link for more info.
Chris
Hi Chris,
thanks for your message and the useful link. I’ve done a bit of googling of transverse myelitis and all seem a lot more acute than mine with paralysis etc. Can I ask what kind of symptoms you had during your first episode which led to that diagnosis? I am mostly experiencing numbness around most of my body, I’ve forgotten what is ‘normal’ now.
I have my brain and c-spine scans this afternoon.
thank you
Rachel
Hi Rachel
I had a mixture of tingling and numbness predominately on one arm and it slowly progressed around my body, especially my torso and abdomen. I eventually returned to normal, but it did take some months. It never resulted in paralysis or anything too extreme. Just to say, the tingling and numbness does return whenever I’m under the weather, but it always goes away…My lesion is still there and present on a MRI over 3 years in.
Hope everything goes well with your scan today.
Chris
Thank you. Yes, mine started in my lower abdomen and spread upwards, so strange! Good to know that it may well return to normal like yours though. Never thought I would miss the feeling of my waistband!
I had the results of my brain and C-spine scans. Neither show any evidence of demyelination or inflammation which is good news. Consultant says this does not exclude a small patch of inflammatory change as a cause for my recent sensory symptoms but that the risk of recurrence or MS is low where brain and cervical cord imaging are normal.
He says hopefully my symptoms will settle spontaneously!
I hope that your symptoms do settle soon! I will mention my own experience however. I presented at A&E with full bladder retention and a catheter, unable to walk on my right leg and with both feet spasming, as well as severe electric shocks through my torso… Upon MRI, I had one lesion in my cervical spine and none in my brain. They did a 2nd MRI that day and found a highly active demyelinating lesion lower down in the thoracic spine. So I had on 2 lesions, and both in spinal cord like Bouds. So, should your symptoms not resolve on their own, have the confidence to ask for a thoracic MRi and don’t let them tell you that spine only never happens - cos it does! All the best to you x
Thank you, I appreciate your advice and will keep that in mind should things not get better!
Chris, I agree with Rachel, this is good to hear. I am going on 3 months now with what is being diagnosed so far as Clinical Isolated Syndrome (CIS) of Transverse Myelitis ™. I have had extensive bloodwork, many MRIs and the only thing that remains consistent is aT2 Hyperintense Lesion measuring 5.6cm in the Thoracic Spine from T4-T6. My left abdomen, left waist, left side of my back down through my left leg and left foot are numb. I also have tingling and mild numbness on my right foot, with the exception of that there is nothing on my right side being affected (thank goodness). My left thigh is always tight. I have been through a total of 8 sessions of 1000mg of intravenous Solu-Medrol (Methylprednisolone) which did not work at all. The sessions were broken out a month apart, 3 sessions three days in a row and then 5 sessions 5 days in a row. I am going for a second opinion on 11/16.
One of the major considerations with TM is the root-cause which can be infectious or auto-immune and the treatments are prescribed accordingly. One important thing to note is that the Covid Vaccine as well as other vaccines have been known to trigger Neurological conditions such as TM, there are many supporting articles out there to review. Other treatments consist of Blood Plasma and IVIG (Immune Globulin Infusion ), my Neurologist feels that my condition is not severe enough for these treatments as the risks outweigh the potential rewards. I continue to workout with weights and cardio as I have been told this is important to prevent atrophy.
Needless to say this has been a MAJOR concern and the discomfort is horrible, constipation is a symptom as well. In reading many articles about TM in states that the Myelin damage along with its associated symptoms can remain indefinitely, get worse, or improve. I have been told by my Neurologist that reports vary, he has had patients whose Lesion has become enhanced and yet their symptoms have improved and others who say their symptoms have improved yet the lesion has reduced in size.
Thank you for sharing some hope