Vitamin D deficency and CIS MS

[rae3342]

I have been in limbo land dx with benign MS. Attack in 2005, all tests normal still weeakness in left leg and arm. I am going through testing again due to dropping things and mental fog, fatigue, headaches and balance issues. Have had MRI done every 6 months since 2005 and nothing new. MRI this Wed. Had an EEG and lots of blood work taken in Feb. and Dr. called yesterday putting me on 3000 UI of Vitamin D daily. I have read about the connection with Vitamin D and MS. My, question Has anyone had Vitamin D deficency before their Dx of MS.
cdvzfr - Rae

[maxthecat43]

I live in the Pacific NW too, and I think most of us a terribly low in vitamin D.  That said, even though ms is more common in this latitude- not everyone here has ms... So, it's hard to really know what low vitamin D  does or does not mean for folks with ms.  I do believe it would make us feel a little better though.

I was prescribed 50,000 units a week for six months, and my levels never improved- but I also have some intestinal damage (non-celiac gluten intoloerance), so that might be why.

I've heard that you can get D3 in injection form, which might absorb much better.  But most of us are already concerned about the number of shots were trying to rotate on our bodies, just trying to take our dmd's.   So, I'm confused about what is the right course of action.

Tammy

[Twinsmom06]

I am in limbo still too. Many brain lesions, negative LP, negative for all mimics, no changes on MRI in 4 months but my B-12 is on the lower side...not terrible but they put my on supplements and gave me a B-12 shot at my last appointment. I was found to be Vitamine D deficiant but not a big surprise. I live in Michigan and I have an office job.

Docs are now checking a few other things (stroke) but keep coming back around to MS. Time will tell a guess.

Hang in there and get some supplements in your system!
Kim

[Sailorsong]

I agree with Lulu on this one,

I went to over 8 different Neuros over the years before I got my MS DX,

#1 said it was depression. Shrink said I was not depressed.
#2 said it was Anxiety.        
#3 sad it was Fibromyalgia My symptoms did not agree with that DX
#4.5.6 said I couldn't have MS because I was not a 35yo female.
#7 said it was a sleep disorder even though sleep study showed no problems.
8 through ... didn't know what was wrong with me so they sent me to Vanderbilt MS clinic. I was now going to the VA from treatment so I was constantly being seen by various Neuros.

Number X what ever number I was up to said it was Sjogren's But once he saw some symptoms that could not be caused by Sjogren's he decided that I had both Sjogren's and MS.

Dennis

[rae3342]

This is my third neuro. First one thought it was stress and anxiety and 2nd thought it was all in my head. I stayed with this one because at least he believed me.
I have been researching MS specialist and depending on what happens at my follow up on 3-27 I am going to request to my PPC to be refered to Rochester for 3T MRI and a MS specialist.
Rae

[Lulu54]

just had to look real quick and it sure doesn't sound like yuour MS is benign- you are having MS related problems and that means the disease is active.

Get another opinion and do it soon, ok?

[rae3342]

Was wondering if the doctors maybe found something and my Benign MS is going to be chaning to MS. Did anyone else have this happen to them?

[Sidesteps]

They now recommend getting your levels optimal, especially those suspected of MS.

My level was 17 at testing. I am currently taking 5000mg. I live in the great PNW so it's not uncommon to have low levels. We are also an MS hotspot. I am actually going to increase my dose to 8000mg as my nutritionist recommended, she doesn't think the 5000mg will incease it quickly enough here. They will recheck in one month.

[rae3342]

Not sure if he tested B12. Had 26 blood tests done, I know he was looking again at all the mimics of MS to rule out.
Thanks for the response.
Rae

[twopack]

Hi Rae.  People with MS often have low vitamin D levels but it is also a common finding in people who DON'T have MS.  So if you are asking if this might be used as some type of diagnostic indicator - probably not.

Is it worth treating?  Absolutely!  Many people feel better in general after treatment with vitamin D.  

Did you doc check your B12 level as well?  Some people get improvment of symptoms with B12 supplements even with normal blood levels of B12.

Mary