having a rough week but will get better
 

hi i also have neuropathy and rls. when my blood work came back i had a vit D level of 9 no kidding.any way one more week of the 50000u of vit D2. I tried B12 before my blood work came back and it kicked my RLS into high gear. I was so bad i had it all day which i had not had in a few years, went off b12 still have days of all day RLS. Will be retested on the vit D in 2 weeks and will continue wit 2000 u per day. Maybe it wont be so low this time.Also have my skin biopsy results which are as follows.

specimen result value abnormal low normal

rt thigh 6.41 < 6.8 6.8 -8.9

rt calf 4.46 < 5.4 5.4 -5.7

diagnosis

rt thigh skin with significantly reduced epidermal nerve fiber density consistent with small fiber neuropathy.

same for the rt calf

"never ask why me only ask why not me"
Brenda

Vitamin D2 on RX does not work well much at all.

http://www.medicalnewstoday.com/articles/237943.php

The general rule today, is 1000IU D3 for every 10 units you need to raise.

The new recommended low normal is 50 in US.

then i have a long ways to go just to get to 50i am starting on an over the counter vitamin d next week after i finish my perscription and i have seen where you have said d3 is better for bringing the levels in your blood so that is what i goti read the label and made sure. Your advice has been most helpful however i will not take b 12 again because as soon as i started taking it my RLS went out of control. it is way better since i went off it not completely but almost.Again thank you for you wonder helpful advice
Brenda

Hope it will get better and better very soon. Yes, D3. That is a very low level.

People who need B12 should really have blood work first, before starting.

RLS can also be due to anemia. Did you have complete CBC to
evaluate that?

Low magnesium levels will also cause RLS. One treatment is to use a quality magnesium supplement (not the OXIDE form) to see if that helps.

If you were very low in B12 to start with, and then took it when you were anemic, then it would rob potassium from your serum to make the new red blood cells. This can cause twitching and cramping and muscle weakness in some people. That can be handled by eating potassium rich foods. The effect wears off as the red cells are replenished and brought up to normal.

I'd really get some B12 testing done if I were you.

I have a good neuro dr and she did a complete cbc and my gp does one every year for my annual (in Jan) also i have had RlS since i was a small child and it runs in the family.My dad,myself,my daughter,and now my granddaughter as well as many cousins who are on that side of the family.here is a list of what my neuro had done cmp,b12 level,folic acid b9,HbA1c,RPR,ISH,VITAMIN D,B1,AND serum protein immunoelectrophoresis urine protein.as well as the skin biopsy.when my gp first dx RLS he did all the blood work thinking the same as you and all came back normal.he went so far as to test me for some tropical illness.that was about 25 yrs ago.long story short i have all the all the fun stuff done yearly (lol)
Brenda

Brenda, you may not know this, and many doctors too don't know this, but lab ranges for B12 in US are VERY low reporting these lows as "normal". It is therefore necessary for patients to double check that test, themselves.

The new lowest normal now is 400 US units.
this site made for doctors, explains this:
http://www.aafp.org/afp/2003/0301/p979.html

Another factor is this: If you took cyanocobalamin and had that reaction, it could be you are not converting properly to methylB12. This is GENETIC and would run in families.
Failure to methylate folic acid and cobalamin leads to many neuro symptoms. It involves MTHFR genetic errors.
So people with this have to use methylfolate and methylcobalamin to see benefits.

The other non-methylated forms of cobalamin will show up in testing the blood, as those tests do not differentiate from the various forms.

A DNA blood test is available, for this. And also a MMA test which if elevated when adequate serum B12 is found, would indicate non-methylation of those forms. MMA is a specific test to show if B12 is actually doing its job and working.

So to be SURE you need the numbers from that B12 test. "normal" these days is just not enough.

i just checked my test results for my B12 and it was 496
brenda

Thanks for checking that. So you are at the borderline of low.

Most of us here with PN keep our test results at around 1000 or more.

There is a reason for that:
http://neurotalk.psychcentral.com/post698522-70.html

Dr. C. Snow, MD who wrote that paper found that some people with neuro symptoms tested in a fairly normal range. He believes that taking the B12 would be helpful for them anyway.

If you do decide to go back on B12 in the future, please use the methylcobalamin form as it is the active form that the body can only use. It is not expensive and is available online at many places.

ok i sure will because i checked the bottle and it is the cyanocobalamin type of b12. thank you for helping with that as i was not sure what was going on when i took it
Benda