This Is MS Multiple Sclerosis Knowledge & Support Community

Good Afternoon

I need help more than ever. I am 31 years old and have been feeling sick for a few years. Things have gotten much worse. I have weakness in my legs, numbness, severe fatigue all the time, muscle pain, joint pain, heat/cold intolerance (besides getting severely overheated my muscles feel like they are getting electrocuted. , the list goes on forever. Well i have been to countless doctors and been told everything from ms, fibromyalgia, arthritis, lupus etc. My last visits were with a neurologist. I had an MRI which showed some white spots, and of my c spine which showed some degeneration. He was thinking MS but was not sure so decided to go ahead and do blood work and a spinal tap. The blood work came back with a total depletion of vitamin b1 b2 and b12 so he put me on vitamins for that. then he talked about the spinal. First off my protein was very high and for the oligoclonial bands its said that my csf has multiple restriction bands but they were also in my serum. I am so frustrated things are getting worse every day but i can not get an answer. Ms runs in my family. It is really depressing when you know your sick and nobody can figure it out I would love if anyone had any ideas of whats going on with me. if you do please let me know i feel like its my last hope. I feel like its time to do research on my own. I hope you all are having a pain free day!

Brittany

Brittybean85 wrote:The blood work came back with a total depletion of vitamin b1 b2 and b12 so he put me on vitamins for that.

Do you know what your B12 test result was and how much you're currently taking and what form, e.g., methylcobalamin or cyanocobalamin?

Brittybean85 wrote:I need help more than ever. I am 31 years old and have been feeling sick for a few years. Things have gotten much worse. I have weakness in my legs, numbness, severe fatigue all the time, muscle pain, joint pain, heat/cold intolerance (besides getting severely overheated my muscles feel like they are getting electrocuted. , the list goes on forever. Well i have been to countless doctors and been told everything from ms, fibromyalgia, arthritis, lupus etc. My last visits were with a neurologist. I had an MRI which showed some white spots, and of my c spine which showed some degeneration. He was thinking MS but was not sure so decided to go ahead and do blood work and a spinal tap. The blood work came back with a total depletion of vitamin b1 b2 and b12 so he put me on vitamins for that. then he talked about the spinal. First off my protein was very high and for the oligoclonial bands its said that my csf has multiple restriction bands but they were also in my serum. I am so frustrated things are getting worse every day but i can not get an answer. Ms runs in my family. It is really depressing when you know your sick and nobody can figure it out I would love if anyone had any ideas of whats going on with me. if you do please let me know i feel like its my last hope. I feel like its time to do research on my own. I hope you all are having a pain free day!

Brittany

Welcome to ThisIsMS, Brittany (Brittybean85).

A vitamin B12 deficiency can cause neurological symptoms. It might be worth your while to watch the following documentary featuring Sally M. Pacholok, RN, BSN, & Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses and their second book, What's Wrong with My Child?); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).



Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12" (52 min.)


"He put me on vitamins for that" – sublingual B12 or injections? Which form – methylcobalamin is preferable to cyanocobalamin (the cheapest form and least absorbable, since the body must decyanate it before it can be used)? What dosage – 1000mcg, 2000mcg, more? (By the way, B12 deficiency can cause "white spots", a.k.a. lesions, seen on a brain MRI.)

In your blood work, did you have a vitamin D test (the "25 hydroxy D" test)? Can you share the actual number results for the vitamin B12 and vitamin D tests with us?

Did your doctor test for your magnesium level? Zinc?

You say, "MS runs in my family"… So does B12 deficiency – it is estimated that 40% of the American population has suboptimal B12 levels. But over 1/2 have vitamin D deficiency.

lyndacarol wrote:So does B12 deficiency – it is estimated that 40% of the American population has suboptimal B12 levels. But over 1/2 have vitamin D deficiency.

Estimated by who?
Seriously, this doesn't pass the sniff test.....

LizardKing wrote:

lyndacarol wrote:So does B12 deficiency – it is estimated that 40% of the American population has suboptimal B12 levels. But over 1/2 have vitamin D deficiency.

Estimated by who?
Seriously, doesn't pass the sniff test.....

Just a couple mentions (the first was already recommended to Brittybean85):

Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12" (52 min.)


@1:23 "The neurological manifestations well precede the hematological manifestations."
@1:46 "In 1948 scientists isolated a red crystalline pigment and named it vitamin B12. It is a primordial molecule responsible for the health of all the DNA in all our cells. The Framingham Offspring Study suggests 40% of Americans have suboptimal B12."

Over 1/2 of Americans Are Vitamin D Deficient - Are You at Risk?
with James E. Dowd, MD, FACR, ABIHM (13 min.):

Hi Brittany,

What a difficult health situation you find yourself in. I do hope your Drs. can figure things out for you fairly soon.

Usually when o-bands are found in the csf as well as in the serum it isn't MS. However, it depends. This link explains Spinal Fluid and it's findings which might be helpful for you if you knew the banding amounts: http://onlinelibrary.wiley.com/doi/10.1 ... 12033/full

http://southtees.nhs.uk/services/pathol ... -analysis/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1014760/

Hi,

There might be a strong clue with the evidence of the B group depletion of a mycoplasma infection. They cannot synthesise the nutrients they need to live so they scavenge them from the hosts tissues. This includes sugars from cell walls, amino acids, nucleobases from DNA, lipids, phosphates as well as essential vitamins and minerals. They can stimulate immune responses that break down the host tissue in a similar way that inflammation does to liberate nutrients. As they don't have a cell wall they can fuse with the host cell creating a hybrid cell that serves the need of the mycoplasma.
If they use the nutrients before you can then you won't feel so good. B group depletion would suggest you will strain your Tryptophan levels trying to make B vitamins. Natural sources of Tryptophan are seaweed, spiulina,spinach,soy,eggs,a number of fish types, meat, dairy, seeds(sesame,sunflower,pumpkin, walnuts) and some whole grains but I am not a fan of gluten. Consume plenty of those while you treat the mycoplasma.
It might be worth testing for mycoplasma.

Regards,