SEE!!! I told them I was sick!!
 

For the past year or so, I've been feeling really bad, and it was getting worse, and worse as the year went on. It finally started getting so bad, that I made an appointment to see the nurse practitioner at my doctor's office last week.

The NP got called away on an emergency, so I ended up seeing a doctor there that I'd never met before. Most of the weird issues that I've been having can be considered non-specific. So, that doctor sort of treated me as if she had to blow me off and not really do any thing. She suggested adding a couple of vitamin supplements. I take b12, so she said I could take more of that, and she also said I could take vitamin D3.

She came pretty close to a diagnosis, probably without meaning to.

I hurt my left knee this week, so I had to go back to the doctor's office, and got to see that nurse practitioner yesterday. I told her that I felt like the doctor had blown me off on the whole "not feeling good" feeling I'd had for the past year. Literally, I've been complaining about this for the better part of a year.

So, after she did an exam on me, and checked my knee, and ordered PT for it. She decided to draw some blood. They took 3 vials of blood, and tested just about everything in there. (that'll be expensive). They did a CBC, hematocrit, checked my b12, and thyroid, and a few other things.

Got a call this morning from her office. The nurse told me what my blood test results were. Everything was fine, EXCEPT for my vitamin D level. It was pretty low.

It was -14!!!! (yes, that's a NEGATIVE!)

I looked at the symptoms for vitamin D deficiency. I pretty much have all of them, but by themselves, they're all non-specific. No wonder every time I said something to a doctor, I got the eye roll from them, and placated to be sent on my way. When you look at all those non-specific symptoms, it just sounds like I'm whining about things that aren't really there.

It took a nurse practitioner to figure it out. (nurses are awesome, I say that because I come from a family of nurses. My dad, my dad's little brother. My dad's brother's widow is a nurse practitioner. I've got cousins that are nurses). The doctors just roll their eyes, the nurse practitioners actually get things done.

I now have a Rx for 8 weeks of vitamin D. I don't know what unit of measurement it's called, but it's 50K of whatever the dosage is. I have to take that once a week for 8 weeks. Then after that, I have another Rx for a lower dose of vitamin D.

I have no idea how long it takes to build up the vitD, and if I'll feel better, or have any of the weird MSish symptoms that have been getting worse lately start to get better.

Just kind of feel better now that I know there was an actual reason for why I feel so bad, and someone is doing something about it for me.

wonder how long it takes to rebuild my vitamin D levels.

Just remember not to forget the dosage on the VitD, some people think they have to take it everyday when it's the 50K. But your levels should start rising by the end of the week from the first dose and by the end of the 8 week course they should be back up to almost if not normal. From then the second Rx is simply to maintain a healthy level.

Or so said my own NP :p. Unfortunately I hit toxicity levels from the first dose, and was even having some issues on the smallest dosage. But eh... my body is weird like that, I don't take it too much to heart. But it does mean I can't say exactly how long until you level out. They should however double check your levels at the end of 8 weeks just to be sure you're ready to drop down to a maintence level.

Mine was 18 at the time and the NP was ready to do another test at the end of 8 weeks but had to do it after 2 weeks, it was almost double what it should have been.:eek: But I also wasn't suffering from any non-descript symptoms or really any symptoms of a VitD deficiency aside from its being common in MS patients which is the only reason it got tested in the first place.

I hope it's D3 and not just D. D is pretty useless.

I've been taking 10,000 IUs of D3 daily and just had my level checked. It's 85!!!! :highfive:

I'm glad the nurse listened to you. They generally do all the work and seem to know more than the doctors. Plus they know how to listen.

Kitty is correct.

The doctors typically give D2 on RX...called ergocalciferol.
This is known now to be useless for raising levels in humans.
It comes in only one dose= 50,000 IU

D3...called cholecalciferol, is over the counter and the active form of Vit D.

You can read more about this here:
http://ajcn.nutrition.org/content/84/4/694.full

It is a shame that doctors still don't know this distinction.

The general rule is that for dosing based on blood work =
1000IU of D3 daily for every 10 points you need to raise.

I'm not sure how much rx vitamin D is but I get my D3 from Puritan's Pride and it's very affordable.

http://www.puritan.com/vitamin-d-326...5000-iu-019377

Yes D3 is the bomb. D is just not good enough, IMO!

We have a Vitamin D thread with videos and the latest information here:

http://neurotalk.psychcentral.com/thread92116.html

This thread is terrific! All the information you could ever want on vitamin D plus people who are using it and their experiences.

Thanks for posting that, mrsD!

How sad that it took a year to find someone to take you seriously, Erin. I think it takes a few months(?) to bring the D level up high, but I hope you start to feel the effects sooner!

Vitamin D is measured in i.u.'s, ius, = international units.

I wonder what it takes to get a medical professional to listen, really listen when we have numerous complaints. Exaggerate, maybe? Write out a list and go over each symptom one at a time but all together?

Sadly it is not enough to get a medical professional to TEST you.

You then have to contend with the wrong, useless treatment with D2 50,000IU (ergocalciferol). :rolleyes:

I don't know what D it is that they gave me, but pretty sure it's probably the wrong one that you all are saying, because I only take it once a week. Supposed to do that for 8 weeks, and then start taking the right one daily after that.

We had a couple of days where it's been warm (relatively...as long as I have a coat and mittens on) enough to sit outside in the front yard in the sun. Even tho it's winter, there's sunlight hitting the front of the house, and as long as we could stand it to sit outside. My dad and I sat out for a little on friday, and then for a little over a half hour today. So, hopefully the sun gave me a nice dose of the vitamin D.

I have been reading about the differences between D2 and D3, so I might have taken a couple of the D3's this weekend.

My plan is, weather permitting, to sit outside on the sunny days for at least 15 or 20 minutes, and hope the sun can squeeze out some vitamin D for me that way.

You all might think I'm nuts about this, but I'm going to go ahead and follow the directions, mostly, on the D2. But, I might be taking an occasional D3. I just don't want to get vitamin D toxicity.

We're about to get a snowpocalypse this week, so I probably won't be trying to sit outside to get some sun. Sitting out in the sun sounds like more fun, just the weather isn't going to be cooperating this week.

When the 8wks of D2 is over, I'm going to be taking the D3 regularly.

I did buy some food that has extra D in it. Some cereals, and milk. (chocolate milk has vitamin D in it, doesn't it?) Just hoping eventually I'll feel better.


Kind of hoping the lack of vitamin D is the total cause for my fatigue lately, and the reason why I've been having more and more problems with the walking. Because maybe once the vitD gets topped off, maybe my walking will get better, and I can start walking better, and maybe get rid of the walker I have to use. I don't expect it to happen, but still hoping.

Hope my ability to sleep gets better soon too. I'm exhausted right now, so I'm probably not making much sense. It's after 4am.

So, I've been taking the 50k dosage of Vitamin D (D2) for three weeks. Thursday will be my fourth dose. I think they call it a "loading dose".

Since I started taking the vit D to rebuild my non-existent store of the stuff, I've noticed a few things. Some of the numbness that I've had has let up. Where it might have been bone numb in some spots, it's now tingly, like a lot of bugs crawling on me, making my skin tickle. Not totally annoying, because it's better than being bone numb. My proprioception is still screwed up tho in my feet.

When I took the third dose of vit D last week, I did it at something like four in the morning. I didn't want to forget to take it, and it's not like I have to take it at a specific time. It's just once a week. I went to bed after taking it. Woke up two or three hours later to use the potty, and that's when I noticed the change in the numbness.

Also, last week, before I had that third dose. I started to notice that I felt physically better. I've actually started to feel better in little bits. I'm not as exhausted as I'd been. Granted, I still feel pretty sick, but I'm feeling good enough now to actually notice a difference between feeling like total crap, and slightly less crappy.

I got to meet my brand new neuro last week. When I told her about the vit D deficiency, and how low it was. She said that was "critically low". Said she wasn't surprised that I had been feeling as bad as I've been. She said that there's a possibility that when I get my vit D levels back up, and do some PT, and core body strength PT. I might be able to dump the walker I've been using. I will believe it when I can fold the thing up, and stick it in the corner, and pile dirty clothes on it. I really do not believe that it's going to cure the bad walking.

There is a problem going on tho. I've been feeling some pretty bad pain in my knees. It really hurts to walk. I'm not sure why. I don't know if I ended up making my bones soft and weak, and that's why it hurts. Or if there's something else going on that's not related to the vit D or the MS. It's just really painful. The joint in my left middle finger hurts kind of bad too. (no. I have not been getting a repetitive stress injury from using my middle finger in bad traffic). My neck, on the right side from the top of my shoulder, to just below my ear, has been hurting a lot too over the past year. It still hurts a lot, but that's letting up. No idea if it's my pillows on my bed, or if it's the vit D deficiency.

I'm kind of worried that the deficiency might have triggered osteomalacia. (softening of the bone). So, now I have to figure out what kind of doctor to see to get the bones checked out. (orthopedic doctors?).

I also want to have my heart checked out, because vit D is important for heart health, and since I have a family history of heart problems in relatives.

Just can't believe that it seems most of the trouble I've been having to deal with for the past few years could be just because I'm low on a vitamin. (bit of trivia, vit D is actually a hormone). Hopefully I've gotten it dealt with fast enough, since it was making my MS worse. (that's what the neuro attributed the worsening MS symptoms to).

I have to admit, that I've been occasionally taking one of the low dose vit D's (D3, 1000 IU's). I've only done that over the weekends, maybe about three times. Also, at night before I go to bed. And yes, when I've done that, I've woken up a few hours later, to feel a slight change in the numbness. I've been really cautious about taking the D3. I don't want to over-do taking the vit D. Which is why I've avoided piling it on. I'm going to wait till after the high dose vit D2 Rx is over to start taking the D3 every day.

I am so hoping that this is going to help my nerves recover, and make me feel not so sick. I can't wait till spring, when it's warm enough to sit outside and get my vit D the old fashioned way from the sun.

Hi Erin524

"I'm kind of worried that the deficiency might have triggered osteomalacia. (softening of the bone). So, now I have to figure out what kind of doctor to see to get the bones checked out. (orthopedic doctors?)."

A rheumatologist might be able to help you with this.