How They Stopped My Demyelination

I have transverse myelitis. They did have to use chemo on me. It wasn't as bad as you would think.

I'm sorry to hear that.
Have you fully recovered?
Its still not an option I would like to see anyone go through.

Unfortunately, I'm still a paraplegic. BUT, I'm in central Ohio. I've started loco-motor training at OSU. I can almost stand by myself after 20 physical therapy sessions. The bad part is that my insurance company wont pay anymore. The good part is Medicaid will pay for more. (Tell all your Republican friends I've tried hard to get the insurance that I PAID FOR to cover my therapy!)

Can I ask where the worst of your demyelination is? Mine is T5 to T7. Where are you on the ASIA scale?

keep up the good progress. i know how hard it is. i dont even know were the demyelination in my spine is. And ive never heard of the ASIA scale. i wouldnt call my self a total paraplegic, everything moves. just cannot stand myself. i cant even feed myself. progress is slow but im young so i have a lot of time. i really appreciate you sharing your story here.

The reason I asked those questions is to try and judge your prognosis. According to the professionals here in the states, physical therapy and loco-motor training are what's going to get our poor souls back to as close to normal as possible. ASIA stands for American Spinal Injury Association. It's how they grade our injury. See here: http://www.asia-spinalinjury.org/publications/2…

The fact that everything still moves is a wonderful sign for you. I hope you can get back to normal eventually. Most of our health insurance companies here will pay just enough to teach you how to be crippled, but they wont pay extra to make you whole. Lovely, isn't it?

I'm keeping a good thought for you. I start my therapy again tomorrow. Cross your fingers for me!

The reason I asked those questions is to try and judge your prognosis. According to the professionals here in the states, physical therapy and loco-motor training are what's going to get our poor souls back to as close to normal as possible. ASIA stands for American Spinal Injury Association. It's how they grade our injury. See here: http://www.asia-spinalinjury.org/publications/2006_Classif_worksheet.pdf

The fact that everything still moves is a wonderful sign for you. I hope you can get back to normal eventually. Most of our health insurance companies here will pay just enough to teach you how to be crippled, but they wont pay extra to make you whole. Lovely, isn't it?

I'm keeping a good thought for you. I start my therapy again tomorrow. Cross your fingers for me!

hi everyone ! my brother has been sufferring now for almost 10 years with a diificult living consition due to demyelination….

he was hit suddenly….and over a month – all of a sudden stopped eating – walking & talking…… they tested him for everything — all came out negative — although Docs were certain he had a hyper acute MS — he tested negative for that !

any ways 10 years later…he gets better by himslef – slowly – slowly…as GOVT wont cover therapy !!!!!!

we have recently tried to get him fundraising to cover a therapist who specializes with MOTOR SKILLS – etc…. and he already started working with my bro — but we want at least 3-4 sessions per week….tpo really see the difference.

My brother is still unable to talk – write,,,,sit-up — stand – walk — nor eat. But we keep praying that we can possibly re-train his brain with the right therapy to retrain his motor skills….

PLEASE do keep in touch and abreadt of all that happens with you …..

MUCH LOVE from someone who understands how difficult & challenging your situation is — and my biggest PRAYERS to you for future success !!!

lets kep in touch please.

best -

pamela

thank you for sharing your story. keep up the good work i know its hard. i think its ridiculous government wont do anything to help, i live in Canada and they wont do much. it seems to me that society forgets about us when this happens, im just trying to be productive with what i have left and provide a place that people in similar situations can express them self s and perhaps make a bit of change..

Hi Rob,

I'd like to introduce myself as I suffered and recovered from acute demyelination of the spinal chord and optic nerve when I was 13.

I'm now 25 and completely recovered (apart from a little barely there nerve scarring at the back of my eyes that my optician noted).

I was looking at this article: http://www.guardian.co.uk/science/2010/may/30/a…
I found it pretty intersting to see that acupunture stimulates adenosine, and wondered if that had anything to do with my recovery from demyelination. I was doing a bit of fishing around for information after seeing the acupuncture article, because I never really looked into it much and that's how I stumbled across your site.

I was 13 when I suffered painful muscle spasms which hospitalised me. I lost use of my legs and a 'grey curtain' descended in my vision which meant I could only see using my peripheral vision from about nose to floor height.

The National Health service doctors stopped the demyelination with the corticosteroid prednisolone and I was told my recovery was 'the fastest they'd ever seen' despite at one point it looking like 'I may have MS if it comes back'. It never did, and I have fully recovered my sight and motor control.

After seeing your post: http://demyelination.net/2009/11/16/nutrition-a…
I wanted to send you a message to see if you wanted to talk about the supplements and things that my Mum tried. The demyelination stopped within a few months and I was seemingly back to normal in 6 months, although my age probably had a lot to do with the speed of my recovery.. I'm sure you know a hundred times more than I ever do about the field.

I'd have to ask my Mum about it, but I think the gist of it was nutrition (as you seem to be aware) and physiotherapy.

If you would like me to get a list of the nutrients I was taking I can find out, I'm fairly certain the main nutritionist whose work we followed was Alfred Vogel. Off the top of my head, she used to force me(try getting a 13 y/o to eat fruit and nuts!) to eat a dozen apricots, whole brown almonds sunflower seeds, pumpkin seeds and made me take echinacea several times a day at the highest strength.

I also had regular massage to help with the muscle contractions, and a (very nice) lady taught me relaxation techniques which really helped.
I have no idea if the acupuncture helped, but my Mum swore they did. She currently teaches a chinese lady English in exchange for acupuncture (which may be of interest to those of you without an NHS service to help pay for these things) and says it really helps with her menopause symptoms.

If this study shows that acupunture releases adenosine, and adenosine is shown to 'increase tissue repair and reconstruction' then perhaps this is of interest to you.

I don't know if I'm telling you anything new, or if it helps. I wish you a speedy recovery, if you have any questions please don't hesitate to ask.

Hearing that you pay taxes and this doesn't cover healthcare makes me so mad. If it wasn't for the NHS I'd have been paralysed.

Best wishes,
Kayleigh

I expect to be recovering from demyelination for the rest of my life, so any info would be great. To tell you the truth I doubt I will recover in 6 months even though I'm young, 28. But I'll try anything you suggest.

Who was the nutritionist you saw?