Zebra in a herd of horses.
 

Hi, my story is long and complicated so I won't go in depth just yet.

I have a rare illness the result of which has caused degeneration of the posterior columns of the spinal cord causing central neuropathy/myelopathy. I also have peripheral neuropathy. End result is difficulty in walking, ataxia, hypertonicity and muscle spasming. I use a walker for mobility at home and a motorised wheelchair for trips outside the house.

I haven't read a lot of the forum yet but I'm sure glad I've found a place where I won't feel so alone.

Bye for now.

Greetings!!
 

Thank you Darlene.

I have been diagnosed with dystonia and hypertonicity due to a neurological disease (amongst other conditions).

I've been doing it a bit tough mentally for the last couple of months and I finally reached out for help from my doctor and I'm pleased to say I'm now getting some psych support.

It's hard dealing with a chronic illness but I'm the type of person who likes to pretend I'm doing ok. It feels so good to reach out and find there are people who respond.

Thanks again.

Welcome. Hope to see you posting often. :)

Welcome to NeuroTalk:

I'd like to suggest and ask if you have had proper evaluation of B12 levels? New normals are higher than the lab ranges that labs still report. So a level below 400pg/ml may contribute to your spinal atrophy. (this is called combined degeneration of the spinal cord).

This is a new video explaining:
http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

And this is my B12 information thread to guide you if you need it in supplementing if you are low:
http://neurotalk.psychcentral.com/thread85103.html

It is difficult to believe that in this day and age, people can go to multiple doctors and specialists and still this crucial nutrient may be misdiagnosed or missed entirely. But it is still happening every day.

The video is long but very interesting and important.

Thanks Mrs D but I have my levels monitored every month now. I have monthly B12 injections and my levels are now high normal.

I was told that the combination of very low copper with very low B12 in the beginning, is shown to increase the severity and permanency of the nerve damage. The damage is supposed to have stopped now but I have not had any improvement. It's three years since the gene mutations that cause this problem were found and I have been having treatment since then but I still have permanent damage.

I have no Babinskis reflex, and very increased reflexes in my ankles and knees. I have no position sense to my hips and no vibration sense to my hips. I have altered sensation to T2. That originally tested abnormal to T4 then worsened to C3 and improved back to T2. I was grateful this one improved because my doctor said C3/C4 keep you alive! (Something they learn in med school I think). They were a bit worried my diaphragm might be affected.


I go into hospital every month or so for 4 or 5 days for intravenous copper and steroids and this seems to be keeping it reasonably stable but I do get fluctuations in function and when my symptoms get worse I always worry that it's the start of a continuing downward trend. It does my head in!

I did a pretty long post in the spinal disorders thread where I got most of my frustration out :mad:

Hey Kitt, thanks for the welcome.

I'm going to be posting a lot because basically my life is pretty restricted and I spend most of my days on the Internet. I've lost count of the number of Scrabble games I'm playing simultaneously. I'm also a member of a Bone Marrow Forum because I've got bone marrow failure and had chemo for bone marrow cancer. I've been a member there for at least 5 years and they are wonderful people. Unfortunately due to the nature of the Forum we lose members regularly. It's been a bit sad there this last week or so because we lost three long timers. I've noticed after we have a bad run on that Forum it goes quiet for a while. It takes time for people to cope with losing long time Forum friends.

Pleased to meet you.

Talk soon.

Hello, my name is Melody and I just wanted to say howdy and Welcome.

I have read many of your posts and I admire you very much. I often tell myself 'you think you have had a bad day? go and read some of the posts and you'll really appreciate what you have."

Sorry to hear what you have been dealing with. You are in my prayers and thoughts tonight. Just know that.

Sincerely, Melody