I’m trying to figure out if there is anyone else that has had GBS now has a really high vitamin D defiency?
Thanks for y’all’s help!
Deborah
yes just started after gbs i am 2 1/2 years into this crazy ride. i take lots of vitamin d. 400mg. twice a day then a 10,000 unit pill once a week. i always say just my luck to get a syndrome they dont know much about. thank god for this site cause it has helped me so very much. at times i have thought oh kel you are going in insane then get on here and so many are going threw the same thing. i dont know if this helped sure hope it did a little, take care stay strong and one day at a time. hugs
I was tested for Vitamin D and had a deficiency about seven months before coming down with GBS/MFS. I dunno what my levels were right when it hit, but I had gone through some months of supplementation (not too regular though) after finding out I was deficient. My neurologist told me to take 2000iu of Vitamin D every day, whether I'm deficient or not! I got tested again several months ago and was back in the normal range.
Thank you Nostromo! I’m trying to become my own advocate and I’m trying to find things I may have in common with others that have had or has GBS or any other form. Wishing you the best!
Thank you kel! It’s great to hear someone else is going through it too (not great!! But someone who understands. Should you ever want to chat just let me know!
kel said:
yes just started after gbs i am 2 1/2 years into this crazy ride. i take lots of vitamin d. 400mg. twice a day then a 10,000 unit pill once a week. i always say just my luck to get a syndrome they dont know much about. thank god for this site cause it has helped me so very much. at times i have thought oh kel you are going in insane then get on here and so many are going threw the same thing. i dont know if this helped sure hope it did a little, take care stay strong and one day at a time. hugs
Hi Deborah,
I also have been vitamin D deficient. I hadn’t even considered that it may be related to GBS! This is a crazy ride, I am just a year into it.
Thank you 2dogs3catsandthekids. I appreciate your reply. Again, I am trying to find maybe some things we (GBS survivors) have in common.
I also have a vitamin D deficit now which I did not have prior to this.
Thank you Tarhealing! Please as many reply to this as can if you now have a significantly low vitamin D. Thanks again guys!!
We were diagnosed with "D" deficiency during original treatment, (back in mid year) and again recently.
Prescribed the once weekly treatment this week.
We were never advised of a deficiency prior to GBS onset.
Thank you so much Laura. It seems there are so far a few of us who have this in common. Hopefully I can get more to reply so we can see if this is in fact something most of us share. Again thank you.
Laura said:
We were diagnosed with "D" deficiency during original treatment, (back in mid year) and again recently.
Prescribed the once weekly treatment this week.
We were never advised of a deficiency prior to GBS onset.
I don't know for sure if I was deficient, but I assume so because the doctor has me taking a supplement since my diagnosis.
Thank you so much Carol!
Carol said:
I don’t know for sure if I was deficient, but I assume so because the doctor has me taking a supplement since my diagnosis.
I am a nurse educator, which leads me to read as much as I can about topics sometimes. When I learned about other’s connection to vitamin D, I had to look it up in some research. I found one study that showed people with GBS all had low vitamin D and those without GBS did not have a deficiency. The study didn’t show when the deficiency occurred, before or after diagnosis, but I would sure be interested to know more.
Deborah Yount said:
Thank you 2dogs3catsandthekids. I appreciate your reply. Again, I am trying to find maybe some things we (GBS survivors) have in common.
Thank you 2dogs3catsandthekids! I’m still working on it and with trying to get the doctors to maybe look into it if I can. If you find anymore info. out I really would appreciate it!
2dogs3catsandthekids said:
I am a nurse educator, which leads me to read as much as I can about topics sometimes. When I learned about other’s connection to vitamin D, I had to look it up in some research. I found one study that showed people with GBS all had low vitamin D and those without GBS did not have a deficiency. The study didn’t show when the deficiency occurred, before or after diagnosis, but I would sure be interested to know more.
Deborah Yount said:Thank you 2dogs3catsandthekids. I appreciate your reply. Again, I am trying to find maybe some things we (GBS survivors) have in common.