Transverse Myelitis & Side-effects

Hello @heidebyrne911, welcome to Connect. You may notice I changed the name of your discussion to "Transverse Myelitis & Side-effects," to let other Connect members know more specifically what you are sharing about. I'd like to invite @therannmann and @ann123 to this discussion as they have both posted recently about being diagnosed with transverse myelitis.

@heidebyrne911, while we wait for others to come and share their experiences, would you mind sharing a bit more yourself? If you are comfortable sharing, have you discussed this issue with your provider? Have they discussed the affects of transverse myelitis with you?

Hi, @heidebyrne911 – just wanted to check in with you to see how things are going?

Here is some Mayo Clinic information on transverse myelitis that may be helpful https://www.mayoclinic.org/diseases-conditions/transverse-myelitis/symptoms-causes/syc-20354726.

I'd also like to invite @bettysue @reb2011 @adam782002 @julius to join this conversation. julius, you'd mentioned a gentleman who gave a website that showed a therapy for this disease. It's possible this could have been @johnbishop, or he may possibly know of other resources.

You'd talked about rapidly reducing vision and a connection to transverse myelitis. Assuming you were inquiring about yourself or for a loved one, what is your or their vision like currently?

Hi, @heidebyrne911 – here is some information I've found out for transverse myelitis physical therapy.

Are there guidelines for exercising when you have TM?
— https://myelitis.org/guidelines-exercising-tm/
Why a Person with TM Should Consider Physical Therapy
— https://myelitis.org/resources/why-a-person-with-tm-should-consider-physical-therapy/
Physiotherapy for Transverse Myelitis
— http://www.manchesterneurophysio.co.uk/adults/conditions-we-treat/mobility-and-walking/transverse-myelitis/physiotherapy-treatment-for-transverse-myelitis.php

There seems to be a connection between vision loss and transverse myelitis. Have you discussed it with your doctor?

NIH – Neuromyelitis optica
— https://ghr.nlm.nih.gov/condition/neuromyelitis-optica

Anyone here been diagnosed with transverse myalitis?

Hi @mariagraski, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about transverse myelitis. I did this so you can see the information shared by other members and to also invite @adam782002 @timk1965 @therannmann @gigiraj and @aathins into the discussion.

Maria, what did you experience with transverse myelitis? Do you have lingering complications?

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.

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?

I haven't been diagnosed yet but I suspect I may have Transverse Myelitis caused by the Pfizer vaccine. I want to make it clear I'm not an anti-vaxxer but just an unfortunate statistic. My symptoms started a few days after the first vaccine and got much worse after the second. It began with a sore stiff neck, then tremors throughout my body, electrical buzzing throughout my body, extreme nausea lasting for months, electrical surges in my gut, seeing stars sometimes, brain fog, tiredness I've never experienced before, numbness in my extremities and down my spine, sensitivity to noise, light, and smells, etc. I'm in agony most days. The worst is the sudden contraction of my abdominal muscles just as I'm about to drift off to sleep. It feels like someone punching me in the stomach over and over. Overworked ER doctors didn't have the time to deal with a "mystery" case and either dismissed it and said maybe it would resolve itself or they referred me to a neurologist only to find out it could take 4-5 years where I live to see a neurologist. My GP is perplexed and can only offer me strong muscle relaxants and anti-nausea medication, both of which do little but make me feel worse. I'm beside myself. I heard of someone else in my area with the same symptoms who received much different care. She was diagnosed quickly and got treatment. I think the difference was that she lost the ability to walk. I can still walk but I feel very weak and wobbly. I don't know yet how to post this as a new topic so I added it as a comment. Do any of my symptoms seem to fit with Transverse Myelitis?

Welcome Scotiagirl. That's a very long time to wait to see a neurologist. How long ago did you have your last vaccine? I ask because some people find that their symptoms resolve eventually, albeit it may take months. Others have even reported that symptoms resolved with the booster.

Does your GP also suspect that you have Transverse Myelitis? Do you have any autoimmune disorders?

After 7 months of treatment and therapy for Guillain-Barre Syndrome, my Neurologist changed my diagnosis to Transverse Myelitis because of total leg stiffness, bowel and bladder issues and joint pain. Has anyone found effective treatment for total leg muscle stiffness other than muscle relaxer which lowers my blood pressure too much?