Transverse myelitis - anyone?

[DrDiana]

Does anyone here have transverse myelitis, or know of anyone who does?

Can you share your experience with it and how it has affected you?

All in the name of research! Thank you, thank you!

[Carolinesms]

This is all new to me, so pardon any errors. I had a transverse myelitis episode for sure, I don't know where that's going to end up yet. Anyways, it started with incredible burning pain in my pelvis, complete loss of bladder and bowel function, then complete loss of all feeling in the pelvis, legs feeling like I walked up a mountain, then legs and ankles giving out on me. And when the feeling started coming back, it was the feeling of being sodamized with a sharp knife. Tremors, and lhermitte's syndrome. I think that's all of it.

I've recovered all but a numb foot and bladder hesitation.

I apologize for being graphic.

[DrDiana]

thank you, Carolinesms,

Being graphic is necessary if we're talking about medical issues. No worries.

Boy, that sounds simply awful. I'm so glad you are doing better now. Yikes.

Let's hope that never returns!

[StartingOver]

I too had a transverse myelitis episode with my first (and only thus far) relapse 2 months ago. Oh, did my symptoms run the gamut. Pardon me if I forget anything; the list is extensive.

- cutaneous numbness from the breast line down (front and back of body) that started on my left side and over the next week or two spread to my right

- weakness in lower left leg

- weakness in upper right arm

- significant loss of function in the last 3 fingers of right hand

- urinary hesitancy and bowel constipation

- painful spasm of right arm and shoulder (the only pain thus far, thank God)

- Lhermitte's (still persisting)

- spasms of toes on right foot and muscle fasciculation of right quadricep (both mild)

I have recovered from most. The Lhermitte's is still there, my right hand is fully functional again but the finger joints are a little stiff, and the skin on my left leg and hand does not have normal sensation---it's not numbness, but it's hard to describe. Just not normal.

Hope that helps!

[DrDiana]

Thank you, starting over -- it DOES help!
You hang in, OK?

[fee001]

Hi!

I think this is called "The Hug" in the UK, a very common phenomenon

Fiona

[Helevitia]

Hi

I've had TM for 18 years as of July 6th.

Paralyzed from the chest(above the nipple line) down and in a wheelchair for 4 months. On a cane for another 6 months. I have a numb band around my chest and my pinky and ring finger are 90% numb on the right hand as is my lower right arm up to the arm pit. My left arm isn't as bad. I have 75 to 90% feeling from the thighs to my chest and 40 to 70% feeling from my thighs on down. I can't run. I experience nerve pain mostly in my legs and in my arms. I have some bladder issues, meaning that I can't hold it very long, and I have constipation a lot. Sometimes I have banding but much less the last 10 years.

I have mostly lived a normal life. I work full time and for a long time I was very active with biking, tennis, paintball, hiking, etc...

In 2002 I started experiencing major back pain. I cut out activities and stopped lifting things over 30 pounds. I also started taking medication for the first time.

All was well until a few months ago when I started experiencing fatigue when the weather got hot. Also, my back pain came back with a vengeance. In hindsight I realize that stress seems to be the cause of my back pain. My nerve pain comes back strong when I have back pain. MRI's are all clear of lesions, though I do have degenerative discs(but not where my back pain is).

That's the short of it Let me know if you wnat more info.

Cheers!
Dave

[DrDiana]

Thank you so much, Dave,

How brave you are. I loved your "Cheers!" at the end of that long list of symptoms. Yikes.

I appreciate your help and hope you get lots of relief soon. It's so surprising that nothing showed up as far as lesions on your spine...

Hang in, OK? And never lose that smile. You certainly reminded me to stay positive through this journey.

Thank you for that!
Diana

[thethdj]

2014. A year I won't soon forget. I had just got over yet another sinus infection. I was on my way home from work when I noticed what appeared to a slight warming sensation under my right thigh. The next day it was an all day pain in my neck and upper back like I had slept wrong. I went to work though and was later taken out by ambulance when I could barely move. The er room, though efficient, diagnosed me with a mere pulled muscle. Sent me home with a muscle relaxer, pain reliever, and papers staying if you experience these symptoms please come back in, which of course I did when I noticed fatigue, what felt like my feet had fallen asleep, and suddenly I had to be standing with my arms straight up in order to pee, weird I know.

Once I arrived at the hospital i almost immediately lost control of my bladder. And the symptoms slowly progressed from there. Luckily, the top half of my body remained functional.

Today, I suffer from only a neurogenic bladder and bowel, which are of course manageable. I know I'm one of the lucky ones. My biggest fear is, well, what if? I'm not depressed by any means I'm very thankful for the blessings I've received, but every morning it is still there. Will this be the day? Well I blink and suddenly everything will go dark. I'll just suddenly more be able to speak, or walk. And, I know it sound cheesy but my biggest fear is to not be able to tell my family one more time how much i love them.

I've planned as much possible, picked a POA, wrote a last will and testament, made sure allergies listed in my wallet, that certain friends and family members have access to my home and important documents, none of which I expected to do at 32.

I'm just looking for...similar experiences to know, I'm not alone in my fear.....

[DrGeoff]

I started with TIM (I being "inflammatory").
Toes went numb. Numbness spread up my body as far as my armpits. GP said "See a Neuro fast!" Went private (the British NHS does not do "fast"). The numbness faded, but an MRI showed spinal lesion T5-T6. Neuro referred me to himself in the NHS and then a round of tests (LP, MRI, Blood, etc), and a year later it was re-diagnosed to RRMS. In the meantime I had done a trip to Prague and two to the US, with only a increase in fatigue to show that there was anything wrong. The first relapse was five months after that - which started the clock for DMD eligability.

You need to make sure - ask - that the TIM onset counts as a first relapse, and get it across that you want to start a DMD as soon as you can. This could defer further relapses for several years. If you already have one, ask your MS/Neurology nurse. If you don't have one, ask your Neuro's secretary about being put in touch with one. You really do need someone who you can contact if new symptoms arise.

Geoff

[HappyPoet]

Welcome, thethdj,
So sorry you had an attack of TM. My attack of TM caused the infamous 'MS Hug.' You're definitely not alone in your fear. One strategy that helps me deal w/ fear is to compartmentalize it ... I put mine in a small box in a far, far corner of my mind so that it can't easily cause added stress in my daily life. But whenever my fear does start to get the better of me, I take Xanax, an anti-anxiety med that's prescribed by my PCP, which greatly helps to calm my worries so they don't negatively affect me and all those around me.
Good luck.
HP