[frogga]

Hiya

I normally post on the RSD forum. I have RSD (Reflex Sympathetic Dystrophy), Dystonia and other random muscle/ nerve issues (and being english the drs gave me the choice of staring treatment or spending the next 2 years waiting for the correct scans to give a "correct" name to what on earth is going on. (The neuro diagnosis switches... MD, MS, random other stuff)

I've gone from being a trouble free 16 year old who loved sport and music and who dreamed of being a doctor, to being a wheelchair user. Over the last 5 years I have lost alot of movement and now require 24 hour care. My neck muscles are very weak and have been for the last 18 months. I have an otto bock headrest on my wheelchairs (the deep one that stops all rotation) and am only in my wheelchair with tilt etc on.

I have used a neck brace regularly during the last 18 months - I try and wear it only when "necessary" (travelling/ some transfers/ bad days). I have progressed from a soft basic foam collar, a plastic reinforced ring one, to an A and E halo splint, to a Philidelphia, to a Miami J. I intermingle all of these but many of them don't work anymore and the phillie and the miami have given me pressure sores....

Does anyone have any advice about appropriate collars? I was thinking about getting a headmaster but I'm not sure!

any help would be VERY appreciated!

Thanks

Froggsy xxxxxxxxxxxxx

[Aletha]

Hi Frogga, I am a new member.

I met someone in California 2 weeks ago with Dystonia. He is having a rough time as well. I told him that my husband has had wonderful reults using LDN for his MS. My husband is back to 2 sports a day and working full time. I have no idea if anyone has tried it for Dystonia, but it might be worth a try. It is non-toxic, cheap to purchase and very minimal in side effects. Most (if any) side effects are usually hard time sleeping, stiffness in legs (usually for MS), and vivid dreams. If one gets side effects they generally go away within the first month.

It just seems like Dysonia is an auto-immue problem and most auto-immune disorders that I know of are helped with LDN. The main thing that it does is stop progression for the ailments it works with. Then we consider it icing on the cake if there is symptom relief as well. My mom finally got on LDN for PD about 2.5 months ago. Mainly she has lost her fatigue and just feels better overall. My husband with MS has lost all of his symtoms and his MRI's are coming back great (no progression and his one lesion no longer enhances). If you would like to read about it, you can log onto the following web page with my husbands story or just look up LDN (low dose naltroxone) on the web.

http://www.webspawner.com/users/introtoldn/index.html

I wish you the very best in trying to find help with this ailment. Kind regards, Aletha