Advice please

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Advice please

Postby starsing123 » Wed Oct 14, 2015 11:40 am

I just need some advice. I have been experiencing random symptoms for the past 2 years. It started with a numbess in my arm that happened after I carried in groceries. Over the course of a few weeks the sensation spread to random places all over my body. I went to the dr and was told that I was hyperventilating, but the symptoms never went away. My eyesight suddenly went crazy. I have always needed contacts, but now even with contacts my eyes will suddenly go blurry. They will fix themselves after a few minutes, but it happens often. Also I see double whenever I look at LCD lights. I was told by an opthamologist that it was probably an undiagnosed astigmatism, but my eye doctor cant find one.My symptoms are body wide and vary day to day. Other symptoms I experience are:
*Perceived stiffness/ weakness - I "feel" like I cant do something but when I try I can. Gripping small objects seems to be difficult.
*Twitching in random spots all over my body.
*sharp shooting pain in left leg
*Hot spots/patches all over my body-last for a minute than goes away.
*Buzzing in my feet
*an itch I can't scratch
*Stiff/tingly/buzzing fingers
*Pain in arms and hands
*Spasms/buzzing fingers
*Occasional pain in my eye
*Numbness/tingling in my face/scalp
The symptoms vary from day to day and are bodywide.
I have had multiple clean emgs, a clean mri of my brain (w and w/o contrast) and a clean ncv. My bloodwork is all clear except for a vitamin d deficiency I am negative for lupus and sjrogens. I was diagnosed with small fiber neuropathy, and I read that an autoimmune disease can cause it. Does any of this sound like MS?? Are there any more test I should take??
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Re: Advice please

Postby lyndacarol » Wed Oct 14, 2015 1:32 pm

starsing123 wrote:I just need some advice. I have been experiencing random symptoms for the past 2 years. It started with a numbess in my arm that happened after I carried in groceries. Over the course of a few weeks the sensation spread to random places all over my body. I went to the dr and was told that I was hyperventilating, but the symptoms never went away. My eyesight suddenly went crazy. I have always needed contacts, but now even with contacts my eyes will suddenly go blurry. They will fix themselves after a few minutes, but it happens often. Also I see double whenever I look at LCD lights. I was told by an opthamologist that it was probably an undiagnosed astigmatism, but my eye doctor cant find one.My symptoms are body wide and vary day to day. Other symptoms I experience are:
*Perceived stiffness/ weakness - I "feel" like I cant do something but when I try I can. Gripping small objects seems to be difficult.
*Twitching in random spots all over my body.
*sharp shooting pain in left leg
*Hot spots/patches all over my body-last for a minute than goes away.
*Buzzing in my feet
*an itch I can't scratch
*Stiff/tingly/buzzing fingers
*Pain in arms and hands
*Spasms/buzzing fingers
*Occasional pain in my eye
*Numbness/tingling in my face/scalp
The symptoms vary from day to day and are bodywide.
I have had multiple clean emgs, a clean mri of my brain (w and w/o contrast) and a clean ncv. My bloodwork is all clear except for a vitamin d deficiency I am negative for lupus and sjrogens. I was diagnosed with small fiber neuropathy, and I read that an autoimmune disease can cause it. Does any of this sound like MS?? Are there any more test I should take??
Welcome to ThisIsMS, starsing123.

The initial symptom you described (" numbness in my arm") is also called "peripheral neuropathy." It includes tingling and/or pain in the extremities (arms, hands, legs, feet) so it covers several of the items I have highlighted in your list.

Since you are undiagnosed and just starting your investigation for answers, you may be interested in the following suggestions from the University of Chicago. Peripheral neuropathy is a common symptom in many conditions, including MS; but the other more likely conditions must be ruled out first before MS should be considered.

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

In screening for the first possibility, vitamin B12 deficiency (It is estimated that 40% of the American population has suboptimal B12 levels.), initial testing should include 4 tests: #1 serum B12 test (or the newer, more reliable HoloTc test, if available in your area); #2 RBC folate test; #3 serum homocysteine test; and #4 methylmalonic acid test. The "serum B12" alone is not adequate to uncover a deficiency. Do not take vitamin B supplements before testing, as doing so will skew test results. (By the way, I think it is a good idea to request your own copy of any test results – it is useful to have the actual numbers.)

Nutrient tests for magnesium, iron, and zinc levels could yield useful information, as well. I wonder if you have the actual numbers for your vitamin D3 test.

We wish you all the best.

Normal or "clean" tests and imaging are not unusual in the beginning.
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Re: Advice please

Postby CureOrBust » Wed Oct 14, 2015 2:54 pm

lyndacarol wrote:It is estimated that 40% of the American population has suboptimal B12 levels.
Out of interest, are there any numbers on how many or even at what level people start to notice the effects of being sub-optimal for B12? I understand its probably a sliding scale, but for example medications are commonly rated on their poison rating by an "LD50" whereby 50% of the population would die.

PS: I have been tested and do supplement heavily with B12(Metho).
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Re: Advice please

Postby lyndacarol » Wed Oct 14, 2015 6:05 pm

CureOrBust wrote:
lyndacarol wrote:It is estimated that 40% of the American population has suboptimal B12 levels.
Out of interest, are there any numbers on how many or even at what level people start to notice the effects of being sub-optimal for B12? I understand its probably a sliding scale, but for example medications are commonly rated on their poison rating by an "LD50" whereby 50% of the population would die.

PS: I have been tested and do supplement heavily with B12(Metho).
http://www.youtube.com/watch?v=BvEizypoyO0

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

In this 50-minute documentary with Sally Pacholok, RN, BSN, and Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses and their latest book, What's Wrong with My Child?), we find the statements:

@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." And at https://www.youtube.com/watch?feature=p ... oyO0#t=116 "The Framingham Offspring Study suggests 40% of Americans have suboptimal B12."

From page 211 in the book, Could It Be B12?:
"Additional evidence comes from the large-scale Framingham study, which found that nearly 40% of participants between the ages of 26 and 83 had plasma B12 levels in the low-normal range – a level at which some people begin experiencing neurological symptoms."

In my reading I do not recall ever seeing any specific numbers for B12 levels coordinating with the effects of suboptimal B12 levels. If I come across something, be assured that I will let you know.
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Re: Advice please

Postby starsing123 » Wed Oct 14, 2015 9:25 pm

The number next to my vitamin d test said 17. Accoding to the chart below it, it put me below what is considered a normal pediatric range. My b6-plasma said 97...ref range was 20-125. My b1-blood number said 67 with a ref range of38-122. My B-12 folate serum number says that my b12 number is 960 with a ref range of 260-1100 and that my folate number is 14.4 with a ref range of >5. My magnesium and iron test also say normal. I havent heard of the others . How can I be sure that those test were included?
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