Advice Needed-clean MRI-neuro wants another

[wildandfree26]

okay. So about a year ago I started having all the symptoms you can think of. Tingly feet and legs is my one constant symptom. I also have horrible vertigo. Lots of other symptoms but they come and go. These are muscle spasms, burning in my foot, tingly and numb parts of my face.
I had a clean MRI.
Blood tests currently to rule anything else out.
Neuro wants to do another MRI less than a year out.....have you ever heard of a clean MRI and then a MRI showing lesions? its just so pricey! and everything else is coming back normal so I am starting to think I am crazy! It is the most invalidating thing in the world to have so many symptoms and nothing to show for it! I guess I just need guidance, similar stories or something!

[wildandfree26]

I should add, my sister has MS

[lyndacarol]

Blood tests currently to rule anything else out.

Welcome to ThisIsMS, wildandfree26.

Among your blood tests, did you have a vitamin D test (the "25-hydroxy D" test)? If so, would you share the actual number results with us? Has your sister with MS had this vitamin D test? (This test costs between $50-$70 – MUCH less than an MRI!) Or other nutrient testing? People with the MS diagnosis often have low nutrient levels, such as vitamin D, vitamin B12, magnesium, zinc, etc.

When I had the test in January, my result was 24 ng/mL (this is frankly deficient). Your symptoms are common to many conditions, even including vitamin D deficiency. (A vitamin D deficiency can result in neurological symptoms.)

The California-based GrassrootsHealth (http://www.GrassrootsHealth.net) recommends a vitamin D level >40 ng/mL.

[wildandfree26]

Yes, it is 25 and I'm supplementing already for it. The neurologist acknowledged this

[NHE]

Hi Wildandfree26,
In addition to the vitamin D test that Lyndacarol mention, a deficiency in vitamin B12 can cause a variety of neurological symptoms that can mimic MS. Do you know if you were tested for vitamin B12? If so, do you know what your results were?

[wildandfree26]

Yes it was 492 for B12.

[lyndacarol]

Yes, it is 25 and I'm supplementing already for it. The neurologist acknowledged this

As you and your neurologist realize, your vitamin D level (at 25 ng/mL), like mine, is frankly deficient. It is good that you are supplementing; I suggest a couple things to consider about supplementing:

If your doctor is prescribing, be aware that most prescriptions are for vitamin D2 (which is less desirable than D3); if you are buying your vitamin D supplements over-the-counter, be sure the label lists D3 (a.k.a., cholecalciferol).

Vitamin D3 Is More Potent than Vitamin D2 in Humans (2010)
JCEM (Journal of Clinical Endocrinology & Metabolism)
http://press.endocrine.org/doi/abs/10.1210/jc.2010-2230

"Conclusion: D3 is approximately 87% more potent in raising and maintaining serum 25(OH)D concentrations and produces 2- to 3-fold greater storage of vitamin D than does equimolar D2. For neither was there evidence of sequestration in fat, as had been postulated for doses in this range. Given its greater potency and lower cost, D3 should be the preferred treatment option when correcting vitamin D deficiency."

After supplementing for 2-3 months, you should be tested again for your vitamin D status. (There is variability from person to person as to absorption on the same dosage– one person will raise his blood level quickly; another person will see no change.) In fact, your vitamin D level should be tested regularly – once or twice a year – to be certain you have reached and maintained an optimal level.

If a long-term vitamin D deficiency is at the root of your neurological problems, the nervous system has been damaged; it is not an overnight fix, it is not simply a matter of raising the vitamin D level in your blood. It may require maintaining an optimal level for months or even years before the nervous system can repair itself. (Some neurologists recommend the "optimal" levels for people with neurological symptoms should be 80-100 ng/mL.)

[wildandfree26]

thank you. I have discussed all this with my doctor. My questions for this forum was more about the MRI and the fact I had a clear one last year and she wants to repeat.

my doctor is a MS specialist and we are working on ruling out just about everything else.

[lyndacarol]

My questions for this forum was more about the MRI and the fact I had a clear one last year and she wants to repeat.

To your specific question about MRIs, I will share my personal experience, FWIW.

My first three MRIs were perfectly clear, "normal" according to my neurologist. After approximately 2 years, my fourth MRI showed lesions – my doctor pronounced "MS."

Only years later did I learn that there is no definitive test for MS, that MS is a diagnosis of exclusion, and that lesions in the brain are consistent with many conditions – they are not exclusive to MS.