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@NHE Thank you for your reply! I did forget to mention her doc did prescribe folic acid to take along with the b12. Is that a complete mistake if the two negate each other?

@lyndacarol thanks for your reply! That video is quite alarming; I'm considering B12 for myself as well! Also, my mom has been taking folic acid (as prescribed by her doc) along with the B12, and if the two negate each other, there's no sense in taking folic acid anymore right?

And is there no point in doing a spinal tap as well as the evoked potential? Side note: for some odd reason, her neuro sort of laughed at evoked potentials and said those are outdated and no one should use those anymore. Hmm.

M5ms wrote:@NHE Thank you for your reply! I did forget to mention her doc did prescribe folic acid to take along with the b12. Is that a complete mistake if the two negate each other?

Folate and B12 work together. Regarding folate, look for a supplement that contains methyltetrahydrofolate such as 'L-5 methyltetrahydrofolate' or '6S-5-methyl tetrahydrofolate' as these are more bioavailable. Also, one of the better forms of B12 is methylcobalamin and these are available in a variety of forms including sublingual tablets which work well. By the way, did your mother have her B12 levels tested?

M5ms wrote:@HarryZ thank you for your reply! Actually, her current neuro is not an MS specialist. I think he might actually have only a small volume of MS patients which doesn't sound too good. But we do have a second opinion scheduled with an MS specialist and are considering traveling to Rochester for Mayo Clinic's MS center. However one thing I did read somewhere was that MS specialists tend to push for a certain drug that they have been sponsored by. Is that true? How exactly would we know to steer clear if a doc insists on a medication?

A very good idea to get a second opinion at a MS Clinic. While the current neuro may be a very good doctor he may not be up to date on all the latest MS information available. And if he is a good doc he won't mind you getting a second opinion from a MS Clinic.

And yes, depending on if or what drug company may be sponsoring the Mayo MS Clinic, you may run into some pressure to start on a particular drug. But come right out and ask the neuro if any one company is sponsoring them if he/she eventually suggests taking one of the medications. But remember, it is the patient who has the ultimate decision on whether to take a drug or not and if so, what drug he/she wants. Depending on what results you end up getting from Mayo, you can always ask for opinions here to get as much info as possible before making a decision.

Become as well informed as possible !

M5ms wrote:@lyndacarol thanks for your reply! That video is quite alarming; I'm considering B12 for myself as well! Also, my mom has been taking folic acid (as prescribed by her doc) along with the B12, and if the two negate each other, there's no sense in taking folic acid anymore right?

And is there no point in doing a spinal tap as well as the evoked potential? Side note: for some odd reason, her neuro sort of laughed at evoked potentials and said those are outdated and no one should use those anymore. Hmm.

I did not mean for the video to alarm you; the four stories are worst-case scenarios and are NOT your mother's case necessarily. The video offers lists of signs and symptoms found with a vitamin B12 deficiency.

Vitamin B12 is water-soluble – any excess that your body does not use will be flushed out in urine. B12 is not toxic, has no side effects, and is inexpensive. B12 is found in animal-sourced foods – meat, poultry, fish, eggs, dairy. It is absorbed into the bloodstream from the last section of the small intestine – the same part where vitamin D (and others: A, E, K) is absorbed from food.

As NHE has said, folate (a.k.a. folic acid) and B12 work together; taking the B vitamins (folic acid and 12) before testing will skew the results and give an incorrect picture of the situation.

The neuro's assessment of the evoked potentials and advice that "no one should use those anymore" were new ideas to me – he is the medical professional; I am NOT. That testing never revealed valuable information in my case; it may well have been a waste of money.

Many people have a spinal tap in the course of investigating their condition, I know. Personally, I have never had a spinal tap (and would consider it long and hard because I am such a "wuss"). My MS diagnosis was made on the basis of my symptoms and a fourth MRI that showed lesions.

For any medical test consider the risk vs the benefits. All these procedures have risk so make sure you are comfortable with the risk that may result from any procedure. Some people say they would not have the spinal tap done again. What would be the benefit? Why is it necessary?

lyndacarol wrote: The neuro's assessment of the evoked potentials and advice that "no one should use those anymore" were new ideas to me – he is the medical professional; I am NOT. That testing never revealed valuable information in my case; it may well have been a waste of money.

I agree, I had evoked potential and it was a bit silly as I already had an MS diagnosis... basically they hook up electrodes to the back of your head and have you watch a TV that flashes between Black and White. They measure the milli-seconds it takes for your brain to register the change. If there is a delay it means there is damage to the optic nerve. I would say its a waste of time. You can have MS without eye damage. There are no risks with this procedure but it isn't great as it is an old technology.

If its available i would recommend an MRI. You sit in a loud tube with earplugs for 15 to 20mins and it provides the best chance of MS diagnosis. I almost fell asleep! Some people say the contrast is bad for you but the evidence is sketchy at best and you don't need to have it, but it greatly helps in diagnosis. I had asked my neuro for a second MRI to see if i progressed and he said he doesn't recommend follow ups as they have nothing to do with disability progression.

@Kronk well my mother did have an MRI of the brain (which revealed lesions) and then a spinal MRI, no lesions there. But we will be doing an MRI this October to check for progression (I guess more lesions?). I'm thinking if any of this was in fact B12 deficiency, lesions should disappear?

M5ms wrote:@Kronk well my mother did have an MRI of the brain (which revealed lesions) and then a spinal MRI, no lesions there. But we will be doing an MRI this October to check for progression (I guess more lesions?). I'm thinking if any of this was in fact B12 deficiency, lesions should disappear?

One of the problems of lesions in the white matter of the brain is that they do not correlate with MS symptoms. You can have several lesions and mild symptoms and one or two lesions with severe symptoms. It's all about the location of them.

Lesions do come and go in the white matter so it's difficult to base a conclusive diagnoses solely on lesions. That's why they do physical examinations as well and a spinal tap if they feel it's needed. And even with all these tests it can be difficult to give a definite diagnosis. While spinal taps are not pleasant, they have improved them over the years and the side effects are not as bad as they used to be.

B12 deficiency can be ruled out very quickly with blood tests. MS Clinics always check for this.

want2bike wrote:For any medical test consider the risk vs the benefits. All these procedures have risk so make sure you are comfortable with the risk that may result from any procedure. Some people say they would not have the spinal tap done again. What would be the benefit? Why is it necessary?

Because it could make the difference in determining whether a patient has MS or not if all the other tests are inconclusive. That sounds like a pretty good benefit for the person concerned.