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How are you dealing with transverse myelitis

Posted by joanannzick4 @joanannzick4, 3 days ago

I developed myelitis from a virus over a year and a half ago and am still having symptoms that can be debilitating

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Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | 3 days ago

@joanannzick4 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?

REPLY
joanannzick4 | @joanannzick4 | 3 days ago

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.

REPLY
1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | 1 day ago
In reply to @joanannzick4 "I have a complicated condition. I’m experiencing weakness especially in my lower body along with intermittent..." + (show)
@joanannzick4

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.

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@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?

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1 reply
joanannzick4 | @joanannzick4 | 19 hours ago
In reply to @jenniferhunter "@joanannzick4 That sounds like a complex situation. Resting is sometimes the best thing to do. I..." + (show)
@jenniferhunter

@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?

Jump to this post

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.

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