my rheumatologist has had me on vit d for at least 5 years (can't remember exactly how long). Low vit d seems very common through society as a whole, it does not seem to be restricted to people with a certain condition.

cheers
raglet

The timing of this thread couldn't have been better for me. My history is rather complicated, but briefly: I was diagnosed with SFN in early 2005. In late 2007 I started a very quick decline. After a year of multiple tests, and hospitalization in late 2008, finally had Autonomic Testing that revealed moderate Autonomic Dysfunction (CASS score of 6). I was referred to Vandy's neuromuscular clinic. My B12 levels have always been in the mid 500's, but he ran a full B panel, and found that I had a Vit B6 deficiency. He actually expected to find Vit B6 levels too high. Vit B6 is evidently one of rare nutrients that can cause PN by either deficiency or excess, although deficiency is rare.

Between appointments, my mother, who has Mal de Debarquement Syndrome (MdDS) was found to have a Vit D deficiency. (She was actually tested for Vit D because of joint pain.) Within weeks of starting Vit D, not only was her pain diminishing, but her MdDS cleared up. She had been 'rocking' for almost 4 years, and suddenly one day the rocking stopped. Her energy levels increased, and when I talked with her she sounded almost giddy. She insisted I get my Vit D checked.

So, at the next appointment I asked the neuro if he would also test Vit D along with the B6. He humored me. The results were 11 ng/mL - an obvious deficiency. Since Vandy is 4 hours away, and his schedule runs 4-5 months out, he suggested I see my GP for treatment. I took the Vandy results to my GP, who ran his own tests.

His nurse called 2 weeks later to tell me that she was mailing my lab results and a prescription for Vit D - that I did, in fact, have a deficiency. Your post, MrsD was a reminder that I had never received them. Thank You! So, I called and asked they be re-mailed. They came yesterday. Vit D was still 11 ng/mL. The prescription is for 50,000 Units once a week.

I spent the better part of yesterday reading through all of your links, and found that in several of your posts you discussed Calcium and/or PtH deficiency as typical with Vit D deficiency. I have kept all of my lab results since the onset of SFN, so looked back at the results for both. I have been tested for Calcium 13 times. It has always been at the high end of the reference range, and three times has been above. Along with the Vit D, my GP also tested Calcium. It was 9.8 with a range of 8.6-10.2. I have only had PtH tested twice. Both times it was within normal ranges.

MrsD, I would like to hear your thoughts about the Calcium levels. I ran other internet searches and could find nothing that would explain. Also, do you think Vit D deficiency may contribute to neuro problems overall?

Thanks again MrsD. If OK, I'll post my progress here.

I read not too long ago that if you live north of Atlanta, chances are you are quite probably deficient in Vitamin D. Joan

Some people have high serum calcium. It may be due to the way they process it. Or it might indicate bone tear-down because you are not absorbing enough from food due to low D.

The parathyroid gets involved here, and this gets complex. I don't really understand it all myself, but some people have a condition called Paget's.

Here is an article about high calcium in the blood.
Paget's is #7 listed. People with Paget's also have elevated alkaline phosphatase enzyme levels (liver tests).
http://www.parathyroid.com/high-calcium.htm
I don't agree that it is so "rare"... And I don't agree with the high Vit D intake...that has not shown to be very common in recent studies, but was cited in the "old days" along with warnings about D and hypercalcemia.

It can get quite complex, so don't over worry yet.
I am reminded of a show I saw recently Dr. G (the Science
channel's autopsy show)... she did a post on a 55 yr old woman who suddenly died, and found the Paget's in the skull when she took the skull off. But there were no other signs of it and Dr. G said that is what sometimes happens. The Paget's can be mostly silent, and rarely if ever results in death. (the woman died of alcohol abuse and diabetes).

If you fix the D levels, then have the calcium redone, you'll know more.
You'll also want adequate levels of magnesium as this mineral helps get calcium into the bones. Low magnesium would impair bone building in general.

The heart needs calcium to work, and so do the nerves. So when calcium is low, the body tears down bones to provide it.
(low D would reduce absorption from food and supplements as well from the GI tract).

And certainly all of us would be pleased to have you continue posting here your experiences and progress. We all help each other this way.

Thank you MrsD. I'm to follow up with Doctor in 4 weeks for retesting. I'll post the results then.

Mine is dead [diagnosed 2 years after my neuro stuff started], and, after my neuro diagnosis, where the neuro suspected some likely asorbtion issues, I am suspecting that my parathyroid is picking up part of the slack from the loss [along w/meds?] but I wonder about how much the parathyroid can do under the circumstances. I know it can do some, but in all? How much of 'some' is some?
The orthopedist treating me this summer suggested 'forteo' instead of Fosamax+D and that it DOES increase bone density.... Not fond of the concept of 'self-injections'? But if other docs agree, mite go for it.
Any which way it's a danged if you do or don't situation in my book at this point?
Those deliteful blood tests only tell you what's swimming around IN your blood, not what you actually PROCESS...that's the scary part for me about now.
Thank you as always for your great research! It boggles the mind and then some...but parts of it do get thru to this brain at times! - j

First I want to thank Mrs.D and lizziebeth for suggesting that I get tested for Vitamin D.My test showed I was a 10,and also my B12 was at 372.I was diagnosed 6 yrs ago with Pernicious Anemia,my first test came in at 170 and I get a B12 shot 1x a month and also I started with the sublingual B12.I don't know how long my D was down,but I'vebeen having headaches 24/7 for at least a month.Have had the restless /jumpy legs, and itchy hands for years.I have trouble sleeping for more than 4-5 hrs,& my vision was getting bad.
My question is, is there any connection between D and B12 deficiencies?I'm taking 50,000 units of D 1xwk for 6 wks and then will be rechecked.abby2

PS: I never would have thought to ask to be tested for Vit D.

I did the Forteo injections for 2 years after multiple pelvic and sacral fractures. Was actually taking Fosamax the whole time I had the breaks. Worthless as far as I am concerned but Forteo brought my osteoporosis testing back to normal. While I dreaded the injections, I do them again rather than have those breaks again.

Billye

Interesting discussion....

in 2005, I was dx'd with severe vit b-12 deficiency; about two years later, vitamin D deficiency was add; I have PN as the result of b-12 deficiency. I take injections once a week and have for six years. My b-12 levels now huddle around 900-1200, depending on when blood tests are done relative to my injections. I take Vitamin D supplents daily. But only 1000 i.u. a day - is that enough??

I've tried Neurotin 600 mg 3 x a day for a month and no help with PN burning. I've just begun Lyrica 50mg 3x a day...about one week in...still have burning, but not as severe.

Wondering if I should increase Vit D intake? Any thoughts?

Jon