I don’t have an MS diagnosis (although I think I do have it) but what I do have is neurodegeneration in a small area of my cervical spinal cord. Neuro degeneration happens when there has been in the past some inflammation in the CNS and nerves have been exposed. Essentially due to this exposure they die before their time. I did have inflammation in my cord as a result of radiation treatment in 1990. I was also unwell with a MS like attack in 2008 and was told it was a CIS. I did get better but foot drop slowly began to show itself in 2010. I don’t really fit into any category RRMS, PPMS or SPMS due to clinical history and negative LP. I saw a mention on Barts MS Blog on BOPMS (Bout onset progressive MS) and think I could have that. it is when someone as a CIS like attack, recovers well then some time later neurodegeneration happens under the area of old inflammation causing permanent disability.
I read the Barts Ms Blog avidly and pick up lots of useful information there. They actually think that PPMS and SPMS are the same thing. It is just that in PPMS the person has not had any symptoms from the RRMS stage. And that proressive MS is neurodegeneration under the old lesions that happened in the RRMS phase rather than the immune system attacking the nerves directly. The latter is what is happening to me the only thing in doubt is the reason fot the initial inflammatory attack.
My regime is ridiculous but I feel very well on it
B12 injection once per week (on prescription)
krill oil 1000mg daily
vitamin E 750mg daily
Forever Freedom Aloe Vera gel 15ml daily (cured my knees from being sore)
turmeric 350mg daily
Vitamin D and calcium lozengers (on prescription)
The following are strong antioxidants. As I believe it is the free radicals that cause neurodegeneration under areas of past inflammation of the nervous system regardless of the initial cause being MS or something else
maxgxl (a glutathione accelerator) daily
Scoop of denatured whey protein
Astaxanthin 325mg daily
ubiquinol 100mg ( a better form of coq10) daily
resveratrol 50mg daily
organic matcha green tea daily in the afternoon as it really stops me from needing an afternoon nap.
Sizzleing minerals - these help you make better use of the vitamins (I am told anyway).
Doctor has also put me on Simvaststin which is neuroprotective and I also take baclofen.
I also do yoga 3 times a week, weight training and rowing twice and week. I also cycle with my dog running beside me 5 times per week. I also have a little FES device which I use to strengthen my pelvic floor and thankfully this has solved my bladder and bowel probems. I use it 2/3 times per week.
Whatever I have I have been stable with no change for about 18 months. I have been discharged from NHS neuro who thought I might have progressive MS. He doesnt think I have progressive MS now as I have stablized. As a result I have signed up to Private neuro who thinks my problems stem from the radiation I had in 1990. I believe that my regime above has stabilzed everything.
These supplements are expensive. But I get £1000 for christmas from my parents and that is what I spend it on. My sister spends hers on expensive shoes, handbags and clothes!
I have just added Biotin to me regime also because of an article on the Barts Blog this week.