Hey - I wanted to check in -

[jibjen]

Hello,

I have missed you all. I wanted to say thanks for alllowing me to take a break and focus on getting etter. I have been feeling a little rested than before but have been also getting ready to go away for a training for work, I leave tomorrow. ug. I have had a few cognitive things, and emotional things going on but wanted to fill you in on my appt. today.

I had a follow up appt with my neuro today to discuss DMD Avonex. At my last appt. he wanted to run 2 more blood tests for this appt., ANA and a Vitamin D test. Well I guess you can guess from my "topic" what my result was.

He is starting me on injections - and not the one's we had discussed. Prior to me starting my Avonex he wants to get my Vitamin D up as I am VERY low - Sorry did not ask my number. He is setting this up with my primary. I think he said weekly injections.

He said low vitamin D was not uncommon with MS. Any thoughts on this?  
He is trying to cut my Topomax and Tegratol as well as I have had some cognitive issues come up and he wants to see if it my brain lesions or med issues..so that is an experiment to try as well.

The plan is to start Avonex as we earlier discussed but thes steps are first important to do.

Any thoughts or sound familiar of Vitamin D linked with MS? I keep reading that it causes MS? will correcting my Vitamin D fix the MS? (I am doubting)

I hope you are doing well. I miss you.

JibJen
.

[suzsibs]

I hope the vit D helps make you feel brighter.  Good luck with the injections for MS I hope they have an impact on your symptoms.
Good to see you on here.
Hugs xxx

[TheLightSeeker]

With a name Maria, I'm not surprised.
It is nice to experience different cultures.
I was born in Canada, grew up in Crete.
I have many relatives in Greece and some in Italy.
We do get plenty of sun when we visit in the summer
and also in the winter we go to Southern Mexico
on the Pacific side- the sun shines almost every single day
in Jan.& Feb.
Hope your hubby is doing better.
Cheers.
Nick

[MrsAristotle]

Hi jibby yes a lot of people with auto immune get vitimin D defiencincy perhaps it is trying to compensate and uses up more then it should to keep us healthy. I have had low Vitimin D level and added more stuff in my diet, and got myself a SAD lamp to sit by to get that little boost. Its always worse in the winter for anyone to be ones.t

The thing is with vitimnin D defiency some of the symptoms mirror that of MS so you never know what is the vitimin D and what is the MS causing you problems so the soonest you get your injections the better.

Sarah, my friend had dangerously low vit D levels and is on special injections for it.

Nico are you from Italy or Greece. My mum is from Italy. Maria

[sarahw244]

Good to hear from you!  Sounds like things are going quite well with your neuro!  

I, too, have low vitamin D levels, although I am not sure what they are.  They just said they were low and that they were going to prescribe me some Vit. D.  I have never heard of Vitamin D injections before...Odd...

I think I read somewhere that chronic low levels were thought to be one of the many "triggers" to MS.  Not that the low levels cause MS but that low levels kinda add on to someone who is already susceptible.  (you know what I mean, right?  Chronic cognitive issues for me lately too!)

Anyways, don't work too hard on your work training!  And save up your focus and energy for the things that are most important in your life right now.  I think I read somewhere else that low Vitamin D levels can also contribute to cognitve problems and low energy levels.  Maybe I did retain some of those long lectures in school after all!  =)
(((hugs)))
Sarah

[TheLightSeeker]

Hi jibby.
Welcome back.
I'm a proponent of Vitamin D. I grew up in the Mediterranean,
exposed to plenty sunshine for the best part of the year and never till this day with all my travels I have not once met a person who had MS or talked about MS. That's Italy and Greece. I have no idea what the stats are but I  think they must be very low. Same with Melanoma I think.
On the other hand "Scotland has the greatest incidence of multiple sclerosis of any country in the world." Scotland has low sunshine rates for most of the year.
In your case you do have low D. Correcting your D levels won't correct the MS, to my opinion. Vitamin D is only protective from MS.

Ask your neuro- he seems to be open and thorough - if ammonia in the brain (Hyperammonemia) known to cause Leaky Brain Syndrome could be a possibility regarding your cognitive issues as well.
Hope things go well for you. You "come across" cautiously optimistic!
Blessings.
Niko

[illinwithoutacause]

dear jibby,

we are missing you, too, but glad to know things are going okay for you for the most part.

i also had very low vitamin D when i first got sick.  my level was 16 and from what i recall, normal is 30-100.  my dr. said that she likes to see her patients in the 40-50 range.  i take 4000iu/day now just to maintain.  

i could've sworn that your old neuro checked your vitamin D a while back and said it was normal.  am i remembering correctly?

i have also heard that low vitamin D is not only common in folks with MS, but also in those who suffer from other autoimmune diseases as well.  it really has an impact on our immune systems according to some of the things i have read.  i know when i started to take the 50,000/iu megadoses and got my levels up to the normal range, i did feel a little better.  placebo?  maybe.  i just don't know.

i hope you are doing okay and i am glad to hear your doc is still doing right by you.  he sounds so great.  i am really happy you are in such good hands.

with blessings & hugs,
binx