Help I would appreciate anyone's opinion

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Help I would appreciate anyone's opinion

Postby Nclmr23 » Wed Apr 29, 2015 8:58 am

hello, new here I have been living in what I would call my own personal hell for the last 9months. I have been diagnosed with fibromyalgia many years ago but up until 9 months ago I am not convinced . One day at work I noticed my hand went tingling and became painful to which brought me to tears then my left arm went numb for a whole day I have tingling and nimbleness in my hands as well as pins an needles feeling in my fingers I am exhausted and two weeks ago I started to have spasms in my legs that are constant all day I also have a hard time walking after sitting which only lasts a few minutes my feet hurt and are very stiff I have a hard time remembering things as well . Now I do have vitamin d deficiency which I take vitamin d 50,000 units ,B12 and folic acid are normal also amulti nodular goiter which is euthyroid basically not an issue and my endo wanted it taken out but the surgeon refused in which I have gotten a second opinion I have had four positve anas and autoimmune disease has been ruled out by rheumatologist. I am wondering if I am driving myself even more crazy by doing research not one person has even offered an Mri I do have an appointment next month at Cleveland clinic neurology wondering if that'll be a waste of my time as the doctors here just blow me off and my neurologist thinks it's just fibro as far as I know my neuro exams have been normal , I am a smoker as well and have three bulging disc in my cspine with straightening and degenerative disc disease but I was told it only explains my right side arm issues not the left . Thank you in advance for your thoughts
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Re: Help I would appreciate anyone's opinion

Postby lyndacarol » Wed Apr 29, 2015 9:55 am

Nclmr23 wrote:hello, new here I have been living in what I would call my own personal hell for the last 9months. I have been diagnosed with fibromyalgia many years ago but up until 9 months ago I am not convinced . One day at work I noticed my hand went tingling and became painful to which brought me to tears then my left arm went numb for a whole day I have tingling and nimbleness in my hands as well as pins an needles feeling in my fingers I am exhausted and two weeks ago I started to have spasms in my legs that are constant all day I also have a hard time walking after sitting which only lasts a few minutes my feet hurt and are very stiff I have a hard time remembering things as well . Now I do have vitamin d deficiency which I take vitamin d 50,000 units ,B12 and folic acid are normal also amulti nodular goiter which is euthyroid basically not an issue and my endo wanted it taken out but the surgeon refused in which I have gotten a second opinion I have had four positve anas and autoimmune disease has been ruled out by rheumatologist. I am wondering if I am driving myself even more crazy by doing research not one person has even offered an Mri I do have an appointment next month at Cleveland clinic neurology wondering if that'll be a waste of my time as the doctors here just blow me off and my neurologist thinks it's just fibro as far as I know my neuro exams have been normal , I am a smoker as well and have three bulging disc in my cspine with straightening and degenerative disc disease but I was told it only explains my right side arm issues not the left . Thank you in advance for your thoughts
Welcome to ThisIsMS, Nclmr23.

My thoughts?… In my opinion (I have no medical background), the Cleveland Clinic appointment sounds like a good idea since it appears you are not satisfied with your local "medical detectives."

Compose a written list/timeline of your symptoms for next month's appointment. Request your own copy of any test results. You should be able to get these from the doctor's office.

Numbness/tingling in the legs and arms is the textbook definition of "peripheral neuropathy." This is a common symptom in many conditions. You need a doctor-detective to rule out likely possible causes. In investigating the cause of peripheral neuropathy, the University of Chicago suggests the following:

http://peripheralneuropathycenter.uchic ... #bloodtest\

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

You say that "B12 and folic acid are normal." The actual number results are more useful than "normal."

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Dr. Jeffrey J. Stuart, D.O. (This may be available at your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/

On page 11:
"There is much controversy as to what constitutes a normal result for this test [serum vitamin B12 test]. Because of this controversy, this test is often used in conjunction with other markers of B12 deficiency (MMA, Hcy, and more recently the HoloTc).

The authors recommend that results below 550 pg/mL be considered a deficiency. Compare your results to their recommendation. (By the way, taking folic acid will mask a deficiency in B12.)

The newer, more accurate HoloTc test is not yet available everywhere, but is surely available at the Cleveland Clinic where Donald Jacobsen, PhD, conducts research.

http://www.youtube.com/watch?v=BvEizypoyO0

Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12"

I encourage you to watch this 50-minute documentary featuring Sally Pacholok, RN, BSN, & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); 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).
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Re: Help I would appreciate anyone's opinion

Postby Nclmr23 » Wed Apr 29, 2015 10:31 am

Thank you for your reply, my b12 is 706 and folate was 15.4 I am not taking either supplement I am on pristine, zanaflex, vit d and that's about it. Just wondering if this is more ms symptoms and I haven't even thought of neuropathy isn't that usually along with diabetes I don't have that
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Re: Help I would appreciate anyone's opinion

Postby jimmylegs » Wed Apr 29, 2015 1:14 pm

hey there! sorry to hear you're dealing with these issues.

i have seen studies demonstrating that fibro patients are low in magnesium. this issue can contribute to vit d3 deficiency.

question: do you take balancing minerals, in addition to your d3? if not, fyi taking only vit d3 without mag can make a low mag issue worse.

even more of a pain, mag tests can show normal while a patient actually has a reversible deficiency.

another question: do you have a serum mag result on file? if so was it low, mid or high normal?

i would expect low mag to be at least part of the picture where the leg spasms are concerned. final questions - how long have you been on 50,000 units of D3? that's 50,000 IU i presume. is it D2 or D3? are you taking 50K on a weekly basis? all good things to know.

related reading: research on fibro and mag (12,800 results)
https://scholar.google.ca/scholar?q=fib ... as_sdt=0,5

for context: research on fibro and b12 (1,400 results)
https://scholar.google.ca/scholar?q=fib ... _sdt=0%2C5
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Help I would appreciate anyone's opinion

Postby Nclmr23 » Wed Apr 29, 2015 2:27 pm

Hello thanks for the thoughts I've never even heard of low magnesium issues I've never been tested been on d3 50000 in its a week for a month now My vit d level was a16
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Re: Help I would appreciate anyone's opinion

Postby lyndacarol » Wed Apr 29, 2015 3:29 pm

Nclmr23 wrote:Thank you for your reply, my b12 is 706 and folate was 15.4 I am not taking either supplement I am on pristine, zanaflex, vit d and that's about it. Just wondering if this is more ms symptoms and I haven't even thought of neuropathy isn't that usually along with diabetes I don't have that
Your B vitamin levels (B12 = 706 pg/mL; folate = 15.4 ng/mL) appear to be good. My only caution: if you had the "serum B12" test, this test measures total B12 in the blood (that is, the B12 carried on both transporter molecules (haptocorrin and transcobalamin); it does not measure specifically the B12 on the transporter molecule (transcobalamin II), which is the only portion that can actually reach the cells and be used there. The HoloTranscobalamin (HoloTc) test measures this "active" portion.

It is possible not to have a deficiency in the blood, but still have a deficiency in the tissues (cells).

Yes, neuropathy is a symptom that often appears in diabetics. MS too. But neuropathy is a symptom common to many other conditions, too.
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Re: Help I would appreciate anyone's opinion

Postby Nclmr23 » Wed Apr 29, 2015 3:34 pm

I will defiantly be asking for the mag testing and seeing if the b12 was done with that test, also I will ask about neuropathy not sure how they check for that. I didn't know it was common in ms.i appreciate your time and information
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