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How are you dealing with transverse myelitis?
I have transverse myelitis. Had 6 weeks of infusions, 3x a day. Didn't do anything for me. 2 months later I finally got an appointment with a neurologist. He did some office tests and said I had neuropathy. Set me up for 12 treatments, at 2x a week for 6 weeks, with the sanexa Neutrogena therapy. I just finished 5 treatments. No change yet. Is this something I should be doing for myelitis?
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I'm sorry, it's neurogen sanexa therapy, not neutrogena.
Does anyone else struggle with lasting effects from TM (pain, numbness, spasms, legs giving out, etc). Even after recovery?
I (22 F) was diagnosed with TM back in March 2019.
I woke up after a family trip and made my sister and I breakfast, that’s when I noticed the pins and needle feeling in my legs. I brushed it off to just sleeping wrong, but was proven wrong not even 30 minutes later when I became paralyzed from the chest line down.
It took me almost 7 months to be able to walk by myself without guidance/support.
Lately, I’ve been struggling with leftover symptoms.
My legs give out randomly, knees lock up, spasms and I have a lot of pain that keeps me from getting out of bed some days.
I had an mri and blood work done recently but there is nothing there. (Except that I’m malnourished, and vitamin D deficient)
And I was wondering if anyone else deals/has dealt with the same?
I (73 M) have been dealing with legs giving out, knee lock, and muscle (spastic) spasms(right leg, mainly from lower-mid-thigh). My local neurologist suggested a muscle relaxer to alleviate the above symptoms. I am in my third week of Tizanidine(4mg tablets) up to 3 times a day. I cut it down to twice a day - early-mid morning and early evening(when the spasms seem to surface). On the plus side, my spasms have decreased and my legs have not given out and no knee lock. The down side is the major side effect of drowsiness and dry mouth, especially during the first hour. I am going to cut back to once daily in another week only to minimize the side effects. Hope this helps.
I developed myelitis from a virus over a year and a half ago and am still having symptoms that can be debilitating
@jaz4 I wanted to welcome you to Connect. I don't share your diagnosis, but I am a spine surgery patient. While you wait for other responses, do you have some coping tips that you would like to share?
I have a complicated condition. I’m experiencing weakness especially in my lower body along with intermittent tingling. My legs feel rubbery and my upper body feels a bit shaky. It seems to be coming from my cervical spine. I exercise every morning and try to take walks. I did Vyvgard Hytrulo injections for a couple of months. I’m not sure if it helped, but I was doing a little better. A low dose of Valium twice a day has been helping as well. I started pt and they saw my neck was very weak. After doing some neck exercises at my first appointment , I have been extremely inflamed throughout my body. Now, I have a setback and need to just rest.
@joanannzick4 That sounds like a complex situation. Resting is sometimes the best thing to do. I know for me, injections make me worse, and I think the culprit is the polyethylene glycol that may be in them. I've pieced together my reactions over the years and it seems to come down to that. It causes swelling in me or an asthma reaction. If injections make you worse, that may be something to ponder. Have your doctors tried anti-inflammatories or prednisone?
I have done multiple steroid infusions. They didn’t give me much relief, at least immediately. Moving makes me feel better. I learned that my weakness is in my neck. I can’t do any neck exercises or else I will have a total flareup.
I was diagnosed 8 months ago and haven’t returned to my active lifestyle. I’ve tried many treatments and have improved since the onset, but not nearly where I used to be.
I would welcome any help if anyone else is dealing with this.
@jaz4, I moved your post about connecting with members dealing with transverse myelitis to this existing discussion:
- How are you dealing with transverse myelitis? https://connect.mayoclinic.org/discussion/i-have-transverse-myelitis/
I did this to help connect you with other members like @kc161 @hoytpr @barnlady @upnort and more.
Here is some information that you may find helpful:
- Transverse Myelitis - Diagnosis and Treatment: https://www.mayoclinic.org/diseases-conditions/transverse-myelitis/diagnosis-treatment/drc-20354730
Has you tried physical therapy, which is one of the options listed?