Hi Samor,
Your story sounds so familiar, yet unique. It doesn't matter, you know, if you fall and bump. It does matter that you get up.
You can't teach a sport to your girls — was i soccer? — yet you can join them to help a CP man. You are blessed.
I look forward to more adventures, and action pictures, too.
Were you ever told that heat brought on exacerbations? I just wondered how you got around this because working out can produce a lot of heat. I used to be a runner and there are days when I think I'd like to get back into heavy exercise but I'm sensitive about overheating.
Good for you Samor. I as well have had MS since actually 1995 and am 42. I also believe movement and what you put in/out your body keeps you at least stabilized with the help of my Interferon - Avonex. Take advantage when the MS give you a quite time during the day. For me it is mornings, then once lunch starts I start going down hill slowly so I know to relax and that is my quite time of the day. I think people who do the opposite are wasting time for themselves to be productive, whatever that may be, and letting the MS control you more but you want to control it as best you can. Confuse it so you get what you want and not what it wants.
Keep it up.
Hello,
I just read your story and your strenght is admirable!
I have a similar story and apply a totaly natural treatment based on Dr Klenner's protocol.
I hope you find my website useful and keep your head up!!!
Yours
Homer
Hi Steve
Your's is a very courageous story and journey. Mine is a little different. After my mother's suicide in 1981 following 13 years of rapidly progressive MS, I was diagnosed in 1999. Fortunately, my background as a medical professor helped me analyse the medical literature with a view to finding whether it was possible to manage this disease and not deteriorate. To say that what I found surprized me is an understatement. I put all the findings together in a book which I wrote 3 months into the illness, and have been running retreats for people with MS ever since. Many hundreds of people are now living this ultra-healthy lifestyle with a plant-based wholefood diet plus fish, omega 3 supplements, high dose vitamin D, exercise and meditation. 11 years on I and many of these people remain well, many of them without the need for medications. It is worth looking at my website http://www.takingcontrolofmultiplesclerosis.org to see what is possible, and the program in detail.
Be well
George
Thanks for your note. I do hope that you feel well enough to fight the disease. I honestly believe that just by seizing control of the battle that there is an inherent improvement that occurs. Every person is different, of course, but maintaining a positive outlook, supported by optimism seems to really help (emotionally and physically). Keep it up.
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Hi Steve,
Welcome to our cozy little group here. I can tell already that you will have much inspiration to offer to our readers, myself included. Ironically, I just started writing about my journey to find a healthier (and lighter) me. I haven't yet told the community here at MS central about that but will in the coming weeks. (Or perhaps I just did for the folks who read this comment, LOL.)
Very interesting and neat to find someone else who is using a monoclonal antibody treatment, off-label, for their MS. It seems that there is much excitement in the research field for daclizumab (Zenapax) use in MS. Do you know if phase 3 trials have begun yet? I just began using rituximab (Rituxan), technically for RA, but we're hoping it slows down the MS too.
I look forward to reading what you have to share. Glad to have you with us.
Thanks for your note. I am actually going to be meeting with the NIH next week and will be able to give you more information about what is happening with the Diclizumab (Zenapax) clinical trials.
I don't have the scientific and medical knowledge to provide an informed answer here. However, my most basic understanding of Zenapax is that it protects nerves from being damaged from the disease process most typical to MS. This is a bit different from other meds that tend to modulate / influence the immune system.
Hi Helen,
After your quick question here, I wrote a post to try to give an introduction to monoclonal antibodies. I'll put it up this week (with perhaps a follow-up post including more scientific information on how exactly they work).
Hey
Im looking forward to your post. I did look up Zenapax but still am intrested to know if it might be offered to SPMSers. Right now (in the third phase) it apears that the drug is intended tp RRMS? Also it seems the MSer needs to also be taking beta interferon. Any light you can provide would be apreciated.