Just wanted to post a comment about the Vitamin D research.
My best understanding of the ''job' of Vitamin D is to transport calcium from the GI tract, into the bloodstream.
Vitamin D levels are directly impacted by the level of Calcium in the blood stream.
To maintain the proper, delicate, balance of Calcium in the blood, Vit D has to transport more or less Calcium to make sure the levels are sufficient in the blood, if there is too much calcium in the blood stream,(hypercalcemia) Vitamin D's job is to 'REDUCE" so that more calcium in NOT ABSORBED into the blood stream.
So, what does that tell us? our body has a reason to reduce Vit. D...and it is not a mystery why the Vit. D is low...
Vitamin D levels reducing is evidence of the direct relationship on the Calcium levels in the blood. IF THE serum CALCIUM IS NORMAL, and the VITAMIN D IS LOW, then our doctors SHOULD be drawing a PTH (parathyroid hormone) level. Why? Because the only job of the PARAthyroid is to regulate the VITAL element, CALCIUM, in our blood stream which of course, this element, calcium, has a direct impact on nerve health, conduction and the nerves ability to do their job...if the the parathyroid has even one of the four parathyroids, acting abnormally, then, the PTH will be abnormal, or it will be 'normal' if the calcium is high. (both are positive findings for evidence of a parathyroid tumor. Of course Vitamin D levels dropping, in the presence of abnormal PTH levels, is evidence that our body is doing what it should do, to protect us from the negative effects of high calcium...the body MUST reduce the Vit. D level, to lower the serum calcium.)
Why? Because Vit. D's job is to transport calcium into the blood stream. Our bodies would not be doing what it is suppose to do, if it did not lower the Vit. D level.
So, if all MS patients tend to have low Vit. D levels, why are ALL our Neurologist NOT testing to see if we have abnormal PTH levels as well? Is it ignorance?
I have had low Vit. D ( in the low teens) since 2009, when all my MS symptoms started. What did my doctors do? They put me on 40,000 I.U. weekly to get my Vit. D up. At the end of the treatment, sure enough, my Vit. D, was up to 50. They then stopped the Vit. D. A few months later, my Vit. D was back DOWN in the low 20's, to teens again. What did they do? Put me back on Vit. D again. They have done this every year since then...until, I was sent to an endocrinologist for a Pituitary tumor found in my brain scan. ONLY THEN, did anyone say the word, 'Primary HyperPARAthyroidism." So, I researched that disease. And, I learned a lot.
Read here about Vit. D's role: http://www.parathyroid.com/low-vitamin-d.htm
I can only find very little research on anyone evaluating what the role of the parathyroid is in MS patients. What is the incidence of Primary Hyperparathyroidism in the MS population? My neuro would not even discuss it with me??? I was told, 'what are you looking for?' 'What do you hope to learn from this?'
....Well...I answered...'I would like to learn why my Vit. D is always having to be treated...when it appears my Vit. D being low, may be my bodies way of 'protecting me' from the adverse affects of a defective parathyroid gland adversely affecting my Calcium---which of course...affects my nerve health, and being that I have a 'neurological (nerve) disease,' it just seems...relevant to look at the parathyroid gland, which is of course the regulator or Vit. D levels...?'
How do you treat primary hyperparathyroidism? A simple surgery to remove the faulty gland. No expensive life long drugs. There are reports of people post gland removal feelin 'very good' again...and, well, that sounds good to me.
Here is a list of parathyroid symptoms many of them match the MS patient: http://www.parathyroid.com/parathyroid-symptoms.htm
I wonder how many people who have MS, also have parathyroid disease?
How is it diagnosed? Very easily.
Draw: 3 weeks of the following labs.
Serum Vit. D,23,
Serum Vit. D, 1, 25.
Ask for a copy of the labs and compare them to the results on parathyroid.com. If the criteria is met for parathyroid disease, then, we are all in the same shoes...and need to find a doctor who will discuss this further with us.
Is there any chance that some of our MS symptoms are easily treated? I
Is Vitamin D, really the warning flag of something else, vs. a component of the complicated MS patient?
I do NOT know? But, based on my reading, taking more Vitamin D, is NOT what I should do. I just am at a loss to find a doctor who is smart on this subject or hyperparathyroidism, AND who has no skin in the game in the MS community or the parathyroid research community, and can discuss this 'objectively.'
If anyone out there knows of such a doctor, I would love to talk to them.