Comments on: Onset

By: kimberly

kimberly — Sat, 31 Mar 2012 17:46:20 +0000

Hi there. Beautifully written. I’m sorry for your struggle. I do have a question….if your MRI was clear, how do they know it is/was TM? Shouldn’t you have had a lesion?

By: Barbara H.

Barbara H. — Mon, 16 Jan 2012 14:26:36 +0000

I’m sorry to hear of your TM diagnosis, Bekki. Mine came on suddenly and quickly, too, and it was a very scary time. Thankfully I had a good doctor and a supportive family and a helpful church family. Finding others with TM online at the The Transverse Myelitis Internet Club (http://www.myelitis.org/tmic/) was a major help, too — it was wonderful to be able to compare notes with others going through the same thing. There is a TM Facebook group as well, but I am not active in that.

But the biggest help to me was praying, spending time in the Bible, and relying on God’s help, knowing that He had a reason for allowing this even though I didn’t know what that reason was. So often God brought just the Scriptures I needed for the day. I wrote more about that here: http://barbarah.wordpress.com/transverse-myelitis/gods-help/.

I hope you have as much as recovery as possible, Bekki.

By: Bekki B

Bekki B — Sat, 14 Jan 2012 03:01:16 +0000

I have TM iv had it for 2 weeks now and I’m struggling. It started very suddenly and progressed quickly, literally over night, I was just wondering how you cope?

By: Shanna

Shanna — Tue, 14 Sep 2010 19:53:00 +0000

Thank you for sharing your story. I’d never heard of TM before, but I’m glad that I know about it now. It sounds very frightening. I have Fibromyalgia (painful & limiting but not nearly as severe as your problems) and have had a range of unusual other problems. Your life can change so quickly, and what was once easy (like getting dressed) suddenly becomes a major ordeal. I think it’s hard for people to understand what it’s like to have a chronic problem/illness about which little is known and for which there may not be a clear-cut cure. I really sympathize with you.

By: myasthenia gravis

myasthenia gravis — Wed, 16 Dec 2009 18:33:22 +0000

I appreciate with your beautiful blog.

Thanks for share your experience with your article, it’s very helpful and make me get more info.

By: Sue

Sue — Sun, 10 Feb 2008 13:50:41 +0000

Hello there
Everything you mention is so familiar. I was diagnosed with TM 2004 and after 10 weeks managed to go back to work as a nursery nurse although i could only manage a 3 hour day instead of the usual 7 hours. Symptoms continued to be up and down until eventually, following a car accident in 2007, I had an exacerbataion of TM which unfortunately has left me in a wheelchair unable to co ordinate my leg movements. I had intensive rehabilitaion for 16 weeks which helped me to stand with aid and weightbear for transfers. I am still unable to walk and have repeated flare ups which cause terrible fatigue, pain, loss of sensation and of course frustration more than anything. I am no longer able to work, and need care throughout the day to assist with transfers. I dont know whether I am fortunate or unfortunate to remain strong and as independent as possible because this has had an adverse affect on my health. Last year through unassisted transfers I have fallen many times. Some resulting in fractured pelvis, broken ribs, torn shoulder tendon and sacro sprain. This has left me in an unfortunate position of now needing to be hoisted to allow my body to rest.
I would love to hear from you to see how you are now.
I enjoy reading your article and I do agree that faith does help although sometimes we may not understand the reasoning for all of our suffering.
Thanks for taking the time to read this.
Take care.
Sue

By: Sue

Sue — Sun, 10 Feb 2008 13:49:18 +0000

Hello there
Everything you mention is so familiar. I was diagnosed with TM 2004 and after 10 weeks managed to go back to work as a nursery nurse although i could only manage a 3 hour day instead of the usual 7 hours. Symptoms continued to be up and down until eventually, following a car accident in 2008, I had an exacerbataion of TM which unfortunately has left me in a wheelchair unable to co ordinate my leg movements. I had intensive rehabilitaion for 16 weeks which helped me to stand with aid and weightbear for transfers. I am still unable to walk and have repeated flare ups which cause terrible fatigue, pain, loss of sensation and of course frustration more than anything. I am no longer able to work, and need care throughout the day to assist with transfers. I dont know whether I am fortunate or unfortunate to remain strong and as independent as possible because this has had an adverse affect on my health. Last year through unassisted transfers I have fallen many times. Some resulting in fractured pelvis, broken ribs, torn shoulder tendon and sacro sprain. This has left me in an unfortunate position of now needing to be hoisted to allow my body to rest.
I would love to hear from you to see how you are now.
I enjoy reading your article and I do agree that faith does help although sometimes we may not understand the reasoning for all of our suffering.
Thanks for taking the time to read this.
Take care.
Sue

By: Time Travel Tuesday: Accidents or illness « Stray Thoughts

Time Travel Tuesday: Accidents or illness « Stray Thoughts — Tue, 23 Oct 2007 12:29:16 +0000

[...] eight days of hospitalization, and multitudes of all sorts of tests later (told in more detail here), the diagnosis came back: transverse [...]

By: Jenifer

Jenifer — Thu, 26 Oct 2006 12:11:29 +0000

Hi Barbara,
I am so thankful a came across your blog. I’ve recently been diagnosed with TM. I am 45 and am having a hard time coping. I am so afraid that the doctors are missing something and that it is worse than even TM. I had a MRI and they found an lesions/abnormality at T4 and a few spots on my brain. I’ve seen 3 different nuerologist and I’m still afraid that they don’t really know and that I’m in a holding patern to see if the spot at T4 changes. My symptoms have been crazy and so many. I don’t even want to tell them all of the symtoms, because they probably think I’m crazy. I am a christian and I know this has brought me closer to the Lord, but I’ll be honest some days it seems so hard to hang on. I think I need to talk to others that have gone through this and I know I need to continue to pray and believe that god will get me through this. Well, Thanks again and take care.
Jenifer

By: Barbara H.

Barbara H. — Mon, 11 Sep 2006 02:02:11 +0000

Hi, Vickie,

I just tried to e-mail you, but it didn’t work — I got a message saying “No known member.” I hope you’ll come back this way again.

Here’s what I wrote in the e-mail:

Hi Vickie,

It was so good to hear from you! I’m so glad you found me.

I found that my first year was the hardest, but also had the biggest recovery. Even now 11 years later I still experience some small improvements — as well as some good days and some bad days. That goes with the territory, I guess.

Let me share with you some other resources, if you haven’t found them yet:

The Transverse Myelitis Association
http://www.myelitis.org/

The Transverse Myelitis Internet Club:
http://www.myelitis.org/tmic
(This is where I first found other TMers. It’s a great place to ask questions and compare notes with others.)

The TMA Forums:
http://www.myelitis.org/phpBB2/

Besides TM, I am always interested in people’s spiritual journey. If you don’t mind sharing how you came to the Lord, I’d love to hear it. I shared my “journey” on my blog at http://barbarah.wordpress.com/testimony/ (not to sound impersonal by just referring you to my blog — it’s just that I already wrote it out there. )

Barbara