Vitamin D Deficiency with or without an MS Dx

[johnnymutt]

After all the discussion with Vitamin D Deficiency lately, and the surprising amount of people that have it, my curiosity's are peaked. If you get a chance, I'd love to know the answer.

Thanks
Johnny

[Phyllis2010]

I just got off the phone with my endocrinologist. I told him I'd had a really bad day after my first dose of vitamin D assumed I had overexerted. The bad day was Sunday (took the first dose on Saturday) all my symptoms were worse difficult to distinguish what was from d versus something else. However, by Monday afternoon I was literally dancing around felt better than I had in a LONG time, walking without my cane and by evening I felt ready to party. I'm taking 50,000 units of D so maybe it takes awhile for it to reach a steady state in your bloodstream. I just walked 20 blocks with my dog and for most of the time I carried my cane. So hang in there Johnny.

I'm cutting my dose to 50,000 IU once a week instead of twice a week. I'm going to try to tolerate this since the doctor said he might actually have identified the source of my symptoms but we won't know for at least 6 weeks. Apparently, the D helps to build up muscle etc....Of course I forgot to ask my most important question about the parathyroid and vitamin D. Is D deficiency when associated with severe symptoms a marker for parathyroid disease?

[johnnymutt]

Let me withdraw my last statement, hehe. I started having pain in my left shoulder and arm yesterday, but assumed I had just overexerted or something. However, I awoke this morning to find that I was in tremendous pain, not just in the left shoulder and arm, but my whole torso, and lower legs and feet. So, we will shall see where this one goes. My urination has once again gone haywire as well, so I'm wondering if this is spasticity or neuro pain, it actually feels like both. Right arm neuro, left side spastic. Time will tell, Uhg.

NZer1, I would but there are no edits on here. I thought about putting it on, when I was doing it, but I was running out of space, :).

Take care all
Johnny

[NZer1]

I have been tested for D levels and they came back as just in the lower levels of the updated suggested level from Vitamin Council online site.
Johnny you might need to put in the survey have you been tested for Vit D ? Y/N

[jenandherboys]

Forgot to mention...Sx mysteriously disappeared only a few weeks into my Vit D treatment-not nearly enough time for even a minor improvement, then sx returned(slightly different presentation) 6 weeks after the last "remission" and lasted for another 7 weeks-past the end of the Rx treatment(yet another mysterious, spontaneous remission). Thus, I'm pretty sure the hypovitaminosis D is not the direct cause of my Sx.

[jenandherboys]

I am currently being treated for Vit D deficiency w/o Dx of MS.  Level was at 23 in January, I took 50,000 IU Rx ergocalciferol (Vit D2) once weekly for 12 weeks followed by 1000 IU OTC cholecalciferol D3 daily. I am due for a recheck to see where I'm at now.

To: Phyllis2010: Vit D deficiency can lead to hyperparathyroidism, I've read many studies and articles that document this connection.

[fig65]

I had low vit D levels a couple of years ago. Since I started supplementing, my D level is now within normal range, but my symptoms are still the same.

[helen41]

I am being treated for Vit D deficiency. My current diag is narcolepsy plus chronic microvascular disease but I believe MS fits better- haven't had MRI with contrast or a spinal tap yet. Time will tell...

[Pablo_Morphy]

My Vitamin D levels came back at about 20, which is lower than it should be but not horribly low.  I am taking 50,000 units weekly for eight weeks, and will take 2,000 units daily afterwards.  It's hard to discern if the minor tingling/fasciculations I developed were due to the Vitamin D or just my MS bothering me (I think the latter makes a lot more sense).

On the other hand, I have noticed I am not taking as much Calcium/Magnesium as I used to since I started my diet and cut dairies out.  Was I too drastic in eliminating cheese/yogurt/milk altogether, or should I still take it?  I guess I'll find out in the coming weeks...

[Phyllis2010]

First, thanks for starting this thread. I'm supposed to take 50,000 twice a week and based on the fact that you're taking it once a week I'm going to suggest to my doctor (based on my experience with the one dose I took Saturday) that I cut down to once a week. I'm really deficient (<20) and I'd like to get my numbers up to see if it resolves my symptoms. Yeah, it's amazing how many people are D deficient!!!!....Also, the term secondary hypoparathyroidism was mentioned to me in connection with vitamin d deficiency (I'm going to ask my doctor more about that), has anyone else heard of this? Is there a D parathyroid connection? I know the parathyroid can be connected to pins and needles.....Phyllis

[johnnymutt]

I haven't noticed anything different either way yet. I'm on the 50K Ui a week treatment, and started it 4 days ago. That's odd to have adverse symptoms, though I've only recently started to reading about Vit D at all.

To everyone else. Wow, I cannot believe how many people have had,  or is having treatment.  

[Phyllis2010]

Thanks Mary, I was beginning to feel really weird as if I was the only one with a reaction. I neglected to mention that one of the effects was heart palpitations. Who knows? Maybe when you're really vitamin D deficient as I am getting a high bolus dose elicits these responses. Has taking the vitamin D led to any improvements in your symptoms? How long did it take for you to feel better? Today I feel as if I'm diabetic -- weak, shaky, heart palpitations. I'm really trying to hang in there but it's difficult. Maybe I need to take smaller doses. What's a side effect versus a disease symptom? Thanks again, Phyllis

[twopack]

Thanks Phyllis.  I wondered because I've had some problems with my heart rhythm and rate for the last few months (well, it's under control now).  The only difference was the vitamin D.  

The docs seemed to think I was grasping at straws but the vitamin D does have an effect on calcium and that on muscle/nerve function.  So.....why not?  They weren't able to give me any other explanation by the way.  

I'm no expert, but if the experts don't have an answer, I'll usually be looking for one myself.

And yes, I know exactly what you mean when you say it's hard to sift out symptoms vs complications vs side effects vs vs.  I've heard of people who begin to feel quite energetic and well when vitamin D levels come up.  Hope you go there.

Mary

[Phyllis2010]

Mary, the symptoms I think might have been caused by my first dose of Vitamin D (or my chromium supplement) were facial flushing, slight nausea, and increased night time thirst -- I also woke up with a feeling of weakness and nervousness (morning shakes), bowel frequency, and pins/needles in hands/feet/chin. It's difficult to distinguish side effects from an exacerbation of my underlying disease whether Vitamin D deficiency itself, secondary hypoparathyroidism, a glucose imbalance, possible MS or all of the above. My symptoms might have been brought on by overexertion (muscle fatigue), heat, carbs/sugar. I've put in a call to my endocrinologist who wants me to take 50000 IU D twice weekly and 1000 chromium daily. I'm thinking maybe I should cut down the dose to 50000 weekly -- same dose you took. Phyllis

[doublevision1]

Up to 8000iu daily.  Was deficient when first tested, post-MS dx, now mid-normal range.

[HVAC]

I have a high level of D without supplements. Might be my diet and outdoor activity.

Alex

[RefuseToSlowDown]

I am working on an official MS diagnosis, but have also just been diagnosed with Vitamin D deficiency and take 1000 units daily.  I will answer the pole once a diagnosis is established or ruled out.

[twopack]

My PCP did the vitamin D level along with all the other blood work to rule out MS mimics before I was diagnosed.  I took 50,000 units weekly for 12 weeks and now 2,000 units twice a day.  I need to remind her to recheck the level at my next visit.

I'm interested to know what side effects you think may be caused by vitamin D supplementation, Phyllis.

Mary

[Zacksmomi]

I put that I am not being treated for deficiency with dx of MS.  However, by levels are on the lower end and my neuro had me on 8000iu a day.  Two weeks ago I was told I have probable sarcoidosis and vit D is toxic for sarc so I havce quit vit D.  I have not had my levels checked recently.

D

[Phyllis2010]

I'm a limboland lurker on this site; no MS diagnosis but I just received a diagnosis of vitamin D deficiency. Of course, it's possible to have both MS and a vitamin D deficiency. I've currently been prescribed 50000 iu twice weekly for 8 weeks with monitoring every 4 weeks (but I think I may have had side effects in which case I'll take it every 5 days, waiting to hear from doc). I have a level of 20.

[slightlybroken]

I'm currently in limboland with no diagnosis of any kind. Cleveland's MS Clinic is the one that caught the vitamin D deficiency at an 8.3. I started out on 6,000 IU per day for a month, then tapered to 2,000 IU a day. On a second blood draw from my local neuro, my levels were still deficient and was asked to increase the dosage to 4,000 IU a day. I had a third blood draw, and I'm assuming since I didn't hear anything, my levels were good, but who knows.

I voted for "I am currently being treated for Vitamin D Deficiency, without a Dx of MS", but my GP, opthamologist, urogyn, all think I do have MS, or my symptoms are consistent with MS. Cleveland MS Clinic's diagnosis in short was..we know something is wrong...but we don't know what yet, so we'll just treat symptoms, and "watch and wait".What does all that mean? Heck if I know!! All I know is it's confusing as heck :)

[Mybe]

50,000 iu weekly vit D

[Mand125]

I haven't had my vit D levels tested but am looking into doing so.

I will complete the poll once I know. Meanwhile I take 400 iu vit D a day, I have no idea if this is enough because my docs don't seem interested in discussing it!

Cheers
Mand