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Transverse Myelitis & Side-effects

Brain & Nervous System | Last Active: Oct 19 10:02pm | Replies (21)

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@roxiesmom13

My husband has been diagnosed with tm and has experienced loss of feeling from feet to chest with some hand involvement. They are considering infusions with remitiab and wondered if anyone has experience with this.

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Replies to "My husband has been diagnosed with tm and has experienced loss of feeling from feet to..."

Hi @roxiesmom13 Your husband has my deepest empathy. I went through a similar diagnosis and treatment 2 years ago. The
inflammation/demyelination on my spinal cord was caused by a side effect from a bone marrow transplant when my new stem cells decided to launch an attack. My diagnosis was confirmed through MRI and a lumbar puncture.
The technical term was different but essentially it elicited the same response that your husband is having with the lack of feeling from waist to toes, loss of motor skills, saddle area was affected and walking. Some days my body felt so electrified as though I was holding onto a shorting plug. I also developed Lhermitte's sign, a tingling of the arms and shoulders when tipping my head down. Is your husband having this sensation too?

Was his neurologist able to pinpoint the reason for your husband’s transverse myelitis? There are several factors which can contribute to this serious condition and treating the underlying cause is crucial.
https://www.mayoclinic.org/diseases-conditions/transverse-myelitis/symptoms-causes/syc-20354726
In my situation, because of the severity of the inflammation I was given heavy dozes of IV steroids. That got me back on my feet and walking within days, though the Solumedrol infusions lasted 9 months. Concurrently, I was then taking Rituximab/Retuxin treatments over the next month as a follow up.

The Rituximab is an anti inflammatory medication which helps reduce the underlying inflammation on the spinal cord long term. Though it may need repeating. It calms the B-cells in the immune system. Once the inflammation settles down, the myelin sheathing can start regenerating around the cord. Healing for me took about a year. Sensations of tingling lasted about 18 or so months? Now, 2+ years I have just one area of sensation on my back where, under the right conditions, I can feel tingling. It used to really get my anxiety level ramped up thinking ‘it’ was starting all over again! But the last MRI, 3 months ago, showed total healing of my spinal cord! Better living through chemistry!

Here are a few discussions with members about transverse myelitis.
https://connect.mayoclinic.org/comment/264975/
Is your husband able to walk? Has he been given steroids? What are your concerns at this time?