Vitamin D and Longevity

[TerryG]

In April a study out of the University at Buffalo reported on the deficiency of Vitamin D in patients with Multiple Sclerosis. Of the 236 MS patients -- 208 diagnosed with the relapsing-remitting type and 28 with secondary progressive, a more destructive form of MS. Results showed that only seven percent of persons with secondary-progressive MS showed sufficient vitamin D, compared to 18.3 percent of patients with the less severe
relapsing-remitting type. Now this got me thinking about a thread started by rcbaker200 on ‘Vitamin D’, most but maybe not all who contributed were dealing with low Vitamin D levels( wanted to bump but closed).Is the key to longevity, getting vitamin D to near or normal levels? Unfortunately, not a cure, but extending survival length. Is it possible those who have survived for 10 plus years or maybe even 5 plus years have had their
vitamin D normalise? Please can you help fill in the gaps, and answer these questions for me: How long has it been since your symptoms started and diagnosis?, Do you know what your vitamin D levels are and are you taking a D supplements?, Your age at onset and gender?. Thanks, Terry.

 

[Gusflower]

I had low vitamin D levels. I'm taking some extra pills recommended by my doctor. But the dosis I am taking is much smaller than what some of my friends on other forums are taking. I'm taking 20 ug.

 

[Alyoop]

Terry, there is an neurologist I know called Bruce Taylor (now works in Hobart), who has done a lot of research into Vitamin D and MS. You should try and find his research on the internet. He found a direct link between where you live, in relation to the equator, and the incidence of MS. Here in NZ we have a high incidence of MS per head. The research suggests therefore that the amount of Vitamin D that a person absorbs over a life time, impacts on the chances of them having MS. Anyway everybody rushed out and started taking Vitamin D, a good idea but I recently went to an interesting lecture about Vitamin D and MS that mentioned a group of Australian Doctors who have found that too much vitamin D was increasing the relapse rate in RRMS. We are now careful to make sure that the patients take the "best vitamin D" which I think is colecalciferol and only One tablet per month ( ? 25mg) Cant quite remeber the maximum dose, but its small.
I have never heard that Vitamin D is connected in any way with ALS and I feel sure that my husband would have me on it if there was a connection (he is a Dr).

 

[notme]

I saw a report on our local news recently regarding Vit. D--or read it--can't remember. Anyway--the gist of it is that the majority of the population seemed to be low on Vit. D.

With most people working indoors--people using SPF 9000 to prevent skin cancer when they are outdoors, Vit. D being low is quite common. Mine is 11..doc said it was way too low. no clue about what it means with regard to health. I don't do heat--so don't do outside any more than absolutely necessary.

 

[michael0314]

Do you think my Vitamine D would be OK I cut my sun screen down to spf 4500 lol Your too funny. Sorry off topic.

 

[TerryG]

Sorry it took me so long to respond, have to juggle running a business and young family.

Alyloop – Correct, Vitamin D3 also known as cholecalciferol is the best one to be on. Sunlight, If you can, roll up your sleeves and go out and sit in the morning sun for 20 minutes, come back and tell us how you feel.

Thank you notme for responding. There is low vitamin D and there is extremely low vitamin D and as your levels show you are in the latter.
To my knowledge, from my research there has been no studies into vitamin D levels and ALS, the recent study I quoted at post seems to be the first to link MS and vitamin D deficiency. I have no doubt that if the same study was conducted on ALS patients the same result would be found, I welcome people to prove me wrong.
I have much more to say and put out there, for now, if you go to my page it may give you an insight to were I’m coming from.
Regards, Terry.

 

[TerryG]

Bit disappointed at the response, but not totally surprised. Did some more research to see if anyone had looked into vitamin D deficiency and ALS, had to go back to 1997 to what I believe is a Japanese study, which looked at 11 ALS patients. The serum concentration of 25-hydroxyvitamin D (25-OHD) was significantly lower in patients (14.0 +/- 3.7 ng/ml) than in controls (25.2 +/- 4.0 ng/ml). 2 people had levels below 10ng/ml, while the 9 others had levels between 10 & 18 ng/ml. Interestingly, serum levels of parathyroid hormone (PTH) and ionized calcium were elevated in 8 and 6 patients, respectively.

In my previous post, I had said vitamin D3 is the best one to be on, In fact, I am not comfortable with supplementing with this as it has the potential to raise calcium levels. The following is part of an extract titled: “Calcium: the Darth Vader of ALS” which reads, “Evidence that calcium homeostasis is altered in ALS, and that low levels of the calcium binding proteins parvalbumin and calbindin-D 28K contribute to selective vulnerability by decreasing the ability of motor neurons to handle an increased calcium load, with cell injury and death as the consequence”. You see the dilemma.

So if vitamin D supplements isn’t the answer what is? It was only recently that I came across vitamin D analogues, synthetic form of vitamin D that that have been engineered to keep calcium levels in check. One such analogue- “Seocalcitol” “The results of preclinical studies have shown that Seocalcitol (EB1089) is 50-200 times more potent than 1 ,25(OH2)D3. Importantly, it has shown reduced calcemic activity
compared to 1 ,25(OH2)D3”. Am interested in this one for its anti-cancer, anti-tumor activity. Not sure of its availability in Oz but my friend is going to discuss it with her doctor.

Terry.

 

[TerryG]

Seem like I’m not the only one who believes the progression can be slowed down by Vitamin D. Extract dated February 2011, out of the Albert Einstein College of Medicine, Beth Israel Medical Center, New York. Titled, “Can vitamin D delay the progression of ALS?”. Reads, “The pathogenesis of amyotrophic lateral sclerosis (ALS) is multifactorial and a treatment targeting only one aspect of the disease is unlikely to be beneficial. Vitamin D is safe and may delay progression of ALS by acting on several aspects of the disease. In this article we explore how vitamin D may promote VGEF, IGF-1 and axonal regeneration delaying ALS progression. In addition, we discuss how vitamin D may increase calcium binding protein in motor neuron cells conferring a greater resistance to the underlying disease process, as seen in the oculomotor nerve and Onuf's nucleus. Finally, we discuss vitamin D immunomodulator role, decreasing the reactive gliosis in ALS.”

 

[notme]

I have read some info on MS and where people live. It seems where you live impacts MS, so guess anything is possible. I have never been able to tolerate heat or sun, nor has my daughter...we both break out in sunlight. I am more inclined to wonder if sun affects our immune system.

 

[Will]

For what it is worth, my PALS takes 10,000 IU of D every day (in two 5000 IU doses). This is considered a large dose. His progression is slow so far, and when D is measured in the blood test, he is just in the bottom of the normal range.

 

[TerryG]

My friend went on the Chinese alternative medicine path even going off vitamin D3. Her condition started to deteriorate, so went straight back on to D3 and after 4 days was feeling better again. She is booked in to see her doctor, I have asked her get not only the usual vitamin D but also the active form of vitamin D(1,25 Dihydroxyvitamin D3) checked. Was wondering if anyone else knows their 1,25D levels?.
I'm guessing on the very low side.

 

[susanf]

How much D3 do you need to take?

 

[laurel]

I have chronic progressive MS and my husband has CIDP--MADSAM. Both are auto immune diseases, and both of our neurologists recommend 3000 IU Vitamin D3 daily. Anecdotally, my MS is very stable and hubby's CIDP less so as he continues to deteriorate slowly. Hard to know if the vitamin D is helping or not but we carry on with it.
Laurel

 

[Marzipan]

very interesting posts. I recently came across this forum trying to "self diagnose" the trouble with my leg and arm. I too am vitamin D deficient and hope that is the cause of my recent problems. I have been experiencing weakness in one leg for months. Sometimes it feels I'm dragging it a little or it's a little clumsy but no one seems to notice any difference in my walk when I ask. My bloodwork showed a vitamin d deficiency. I saw the neurologist but she only ordered an MRI, EEG and carotid artery test. I have not had the courage to do the MRI yet. The EEG and CA test were normal and she doesn't believe my problem to be caused by TIA or Stroke. I was put on a twice a week does of prescribed vitamin d (50000 usp) but something isn't right. Anxitey is hight. The neuro never mentioned ALS but wanted to "rule out MS". The symptoms of MS and ALSo seem so similar. Am I wrong about that?

 

[gracefullyteaching]

I also find this topic of high interest. I am not diagnosed yet, but my Vit D has been very low all along with the blood tests. I am taking 2000 units a day to bring it up. Have there been any studies on PALS and Vit D? Thanks.