mrbarlow wrote:Sorry to hear that. Reading your profile it wuld appear you have had MS for decades? Perhaps that affects the usefulness of Vit D as a therapy. In contrast my first symptoms were Spring 2010 and othe rthan a bout of Optic Neuritis havent got any worse.
I typically take 10,000 IU a day.
Hi mr barlow,
Yes, I had MS for at least 30 years before dx, and Vit D deficiency could have been partially to blame originally. And if that's the case, it doesn't seem to explain why I had 30+ low disability years without
Vit D supplementation and then major progression with
What bothers me is that I was feeling fabulously healthy at dx, due to improving my whole body/mood with diet/exercise/sleep/humor. And adaptation.
I had always joked to friends that none of my body parts work exactly right, but they all work. Even though I had myriad, minor residual symptoms, I felt great! And I was 52! The real progression didn't even start until after that.
At the time, I was working full-time, wearing high-ish heels to work and walking about a mile in them during the course of every day. The second year after dx, I took LDN for a year, and halfway through it I needed a cane for balance and occasional tripping, so I lowered my heels a bit.
As I've tried one supplement after another, the progression seems to accelerate, and since my gait seems most affected, it has given me a good measure of the extent of deterioration. And since starting Vit D over a year ago, the speed of the downward spiral has been startling. I didn't expect a cure from vitamins, but didn't expect such a decline!
Before the D/B12 last spring (2010), I was still wearing low heels, even with the cane, but now my left leg really drags – even with flat shoes.
The biggest test is cutting my grass every week. I noticed a little leg shaking post yard work 8 years ago, but seldom any other time. Last summer (after D) was the first time I considered paying someone to cut it. This summer it's gotten so bad that my left leg can barely take me back from the garage after I mow. Next time I'll try it with my cane, and it feels like it may turn out to be my last grass mowing. Heat and general fatigue are very low on my list of MS concerns, and that's still the case.
Does it have anything to do with the vitamins? I may stop Vit D just to see if there are immediate changes, but probably not for long. I don't understand, since Vit D has actually "proven" (a relative term) itself in tests more than others – like in the above study link about "progression."
Here are some quotes from another study on the same link:
An International Journal of Medicine provide further evidence for the important preventive role of Vitamin D, not only in reducing the risk of MS, but also the severity and relapse rate for those living with MS.
‘These results indicate that low Vitamin D levels may be triggering the onset of relapses manifesting even 3 months later,’ the authors stated. They went on to say, ‘These considerations are extremely relevant as they highlight the need for well-powered randomized placebo-controlled clinical trials which would firmly prove or disprove the potential therapeutic effect of vitamin D in MS.’
And jimmy, as I mentioned, whatever else I'm taking/eating has obviously fixed the constipation issue – maybe because such a large percentage of my diet is full of magnesium-rich foods.
Or maybe I should start smoking and drinking again...or add more fats and sugar back into my diet...
Wishing better health and all kinds of stability to everyone this morning.