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My Regime - Ridiculous I know !

Hi Folks,

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.

Moyna xxx

wow moyna!

you have an unconventional kind of ms but the fact that you have found a regime that works for you - wow!!

actually i struggle to remember more than 3 pills a day.

keep it up!

carole x

Ditto Carole…WOW!!!

Jan x

Carole, You are a star - and l am so pleased to see that you have taken control of your health rather then leave it to the so-called experts. Who would have only prescribed a list of meds that are not even for MS. At least this is what l have found.

Have you seen MSSENTIAL multi vitamin supplement. From US. lt contains about 40 different vits/minerals etc. lf you google it you can see the long list of the contents. Now - l am good at swallowing tablets - but these are so big and hard - and worse of all l cannot stand the smell of them. And you do need to take 6. But reading down the list l was surprised that they do contain Biotin. The smell actually puts me off taking them. A bit silly of me l know. l have tried just breathing through my mouth when taking them - but l still sort of gag.

l take many supplements -Chlorella- Spirolina - Gaba - Serraptese - D-Phenylalanine and l drink Redbush tea. Along with the usual Highdose Vit d3/B12. And pro/pre-biotics.

And l also take LDN - and l must say, my PPMS has not progressed since taking this.

l do sometimes get muddled up with the ones you need to take on an empty tum - and those you take with a meal.

ln our position - when the so-called specialists have nothing to offer us, l think this is the way to go.

l might contact the Mssential people and ask that they try to produce something that does not smell like that - and also a softer capsule type.

spacejacket

it isn’t my post. it’s moyna who takes all those supplements.

i have those smelly horse tablets (MSential) and i do manage to take it.

along with my D3 and magnesium.

tecfidera is another horse tablet but at least i don’t have to inject any more.

carole x

Thanks Everyone,

Spacejacket, I would love to take LDN but cant as dont have official MS diagnosis. So cant get it online etc.

I must look at MS Essential too

Moyna xxx

Not ridiculous at all Moyna, you are still without a ‘real’ diagnosis and like me, you try to find the answers that ‘modern’ medicine can’t really give just yet, after all it’s ‘modern’!

You look for the answers and will try things out. I respect that a lot and think I do that too - it’s the only reason I’ve managed to get a change to my diagnosis. You are a woman after my own heart!

To go from PPMS to RRMS, well I’m still in a whirl… I don’t physically feel any better right now but having options, changes how you view things. I think that’s why you need a dx.

Moyna, I hope that you do get support and will find a good medicine/treatment plan but suspect it’ll be one you find, not one a doctor will find. In the meantime, we’re al here to prop you up when you have a bad time of it.

Sonia xx

ps. if Aloe gel was a cure I’d dissolve in tears… when I tried it, it was unceremoniously spat into the kitchen sink! I tried mixing with different juices etc. but just could not do it! x

Wow Moyna! good for you.

Long may you keep this control.

X

i’m sure that LDN is used by people who don’t have ms.

you’ll have to have a private prescription though.

the drug itself costs about £15 per mnth.