Newbie in limbo land

[Donnajcooking]

I have never posted on a forum before but am hoping to find that I am "not alone" in this! Brief history ....20 years ago I had a neurological "episode" that involved extreme burning skin, numbness and tingly, blurry vision and general fatigue. Had a clear MRI, shrug of the shoulders, it resolved eventually and life went on. Over the years have had neuro weirdness ... Vibrations, skin burning, lots of eye pain and blurry vision and terrible fatigue. Weird but not life altering.
January 15th of this year I woke up with both arms numb from the elbow down. Soon I had terrible burning on arms, legs, face etc. blurry vision. It has been 10 weeks and things are more right sided than body wide now. Right arm feel weak sometimes, other times "disconnected", sometimes I have terrible cramps in my fingers and toes and have noticed a tremor in my right ring finger. Sometimes skin everywhere burns so bad at night I cannot sleep and eyes are a blurry mess.
Had MRI with and without contrast and came back with non- specific brain changes. Neuro says not MS. Waiting for EMG but can't get in for another month... Meanwhile I feel like I am slowly losing my arm.
Blood work was clear, B12 was high actually, vit D high too. I am not an anxious person... More in denial and kinda don't even want to know but this is getting life disrupting. Sorry for the long post. Anybody been here??

[lyndacarol]

Blood work was clear, B12 was high actually, vit D high too.

Welcome to ThisIsMS, Donnajcooking.

As you probably know, your symptoms are consistent with many conditions. In my opinion, nutrient deficiencies are at the top of the list. I am curious about your blood work. What was the actual number result of your serum B12 test? What did your lab considered to be "high?" Labs establish their own reference ranges, based on the values of all the people who take the test.

What was the actual test result number for your vitamin D test (which I assume was the 25-hydroxy D test)?

[Donnajcooking]

My B12 was 1500. Not sure what my D was but I have taken about 6000 IU of vit D every day for years. In fact when this first started my first thought was that I had overdosed on Vit D because I take so much. I have D tested regularly with a nutritionist and it's always good. I eat gluten/dairy free so take lots of supplements. I wish it was a vit def but don't think it is

[Donnajcooking]

Also I have normal blood pressure and normal blood sugar. Very slightly elevated cholesterol (not on meds). Family history of siblings with Crohn's and Lupus but all auto immune blood work (ANA, Sed, CRP) all came back good.

[lyndacarol]

My B12 was 1500. Not sure what my D was but I have taken about 6000 IU of vit D every day for years. In fact when this first started my first thought was that I had overdosed on Vit D because I take so much. I have D tested regularly with a nutritionist and it's always good. I eat gluten/dairy free so take lots of supplements. I wish it was a vit def but don't think it is

In my opinion (I have no medical training), your B12 at 1500 pg/mL would seem to be good according to the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.).

On page 11, these authors state: “For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/mL.” http://b12awareness.org/could-it-be-b12 ... diagnoses/

One would assume your Vit D level would be good, too. However, there is no correlation between the daily dose of D3 a person takes and the circulating serum level… Some people are efficient at metabolizing D3; others are not. (By the way, it is virtually IMPOSSIBLE to overdose on vitamin D.)

It would still be a good idea to call your nutritionist and request copies of your vitamin D (a.k.a. 25-hydroxy D) tests results. When you get the actual numbers, compare them to the recommendations by the GrassrootsHealth organization (http://www.GrassrootsHealth.net).

Although I don't have the details, your gluten-free, dairy-free diet is a good idea, in my opinion. And certainly, normal BP and normal blood sugar are very good to have. Again in my opinion, doctors have demonized cholesterol levels. Cholesterol is NECESSARY for maintaining the myelin on nerves. (And necessary for making vitamin D.) I'm glad to hear you're not on cholesterol meds.

As you think, your symptoms may NOT stem from a vitamin deficiency – but I think it is important to be CERTAIN, before moving on to the myriad of other possible causes to be investigated.

[Donnajcooking]

Thanks! We would be friends in real life I never take the medicine route unless absolutely necessary and always look first at diet, nutrients etc. Even "if" this turned out to be MS not sure how I would handle it medically. Not opposed to meds they are just a last resort. I do take a supplement for digestion that contains l glutamine and deglyzzhirized licorice and have been wondering if either of those things could be neuro toxic?? I have been on it for years though.
Thanks for the book recommends I will continue to look into nutrition stuff. Hate not knowing... Have never been a fan of mysteries!

[lyndacarol]

Thanks! We would be friends in real life I never take the medicine route unless absolutely necessary and always look first at diet, nutrients etc. Even "if" this turned out to be MS not sure how I would handle it medically. Not opposed to meds they are just a last resort. I do take a supplement for digestion that contains l glutamine and deglyzzhirized licorice and have been wondering if either of those things could be neuro toxic?? I have been on it for years though.
Thanks for the book recommends I will continue to look into nutrition stuff. Hate not knowing... Have never been a fan of mysteries!

First of all, we are friends.

I share your attitude about taking medicine.

As for glutamine or the licorice being neurotoxic… I don't think so from articles I have read. Here is one from June 17, 2012:

Licorice root extract proven to decrease liver enzymes
http://www.naturalnews.com/036201_licor ... zymes.html

In the next to last paragraph: "The authors of the trial concluded that taking licorice root or glycyrrhizin licorice root extracts is safe and effective for reducing ALT and AST concentrations."

With vitamin D always on my mind lately, I must point out that liver enzymes (specifically CYP enzymes) are vital in the conversion of cholecalciferol (the compound made in the skin by the sun's UVB rays) into 25-hydroxyvitamin D3. This substance is then hydroxylated by the kidneys (and other locations in the body) into 1,25 hydroxyvitamin D.

If something is going on in your liver, this may affect your vitamin D metabolism – another good reason for your doctor to measure your 25-hydroxyvitamin D3.