new diagnosis

[chezy]

Hi. I've recently just come back from the hospital after having an MRI which showed 2-3 lesions on my spine and a few dots on my brain ( neurologist couldn't see the ones on my brain but he doesn't specialise in MS). He said that it could be MS and is referring me to the MS clinic where I may have more tests or they will be able to work it out from what I have on the scan. I have had two episodes of pain and numbness on different sides of the body and I'm left with a numb left arm and numbness running down my left leg when I bend my head forward. I have been feeling tired when after sleep and I often get pains in my left eye. Does this sound like MS? Many thanks

[lyndacarol]

I've recently just come back from the hospital after having an MRI which showed 2-3 lesions on my spine and a few dots on my brain ( neurologist couldn't see the ones on my brain but he doesn't specialise in MS). He said that it could be MS and is referring me to the MS clinic where I may have more tests or they will be able to work it out from what I have on the scan. I have had two episodes of pain and numbness on different sides of the body and I'm left with a numb left arm and numbness running down my left leg when I bend my head forward. I have been feeling tired when after sleep and I often get pains in my left eye. Does this sound like MS? Many thanks

Welcome to ThisIsMS, chezy.

Your symptoms are pain and numbness (in left arm and left leg), extreme fatigue or tiredness, pain in your left side… How long have these been going on? In addition, lesions on the spine and brain have just been found. (By the way, abnormal sensations occurring when the head is bent down is known as "L'Hermitte's sign.")

Your symptoms are common to many conditions; they are not specific to just one. MS is a diagnosis of exclusion, made after the other more likely conditions have been ruled out. Too often, I believe, doctors go right to the bottom of the list without checking off the easy ones first.

Since over 1/2 of the world's population has vitamin D deficiency and this can cause neurological symptoms like yours, has your GP order this blood test: 25(OH)D? What were the actual test result numbers? (It is a good idea to request your own copy of any test results – it is important to have the actual numbers.)

Vitamin B12 deficiency is also extremely common. Has your GP ordered the 4 initial tests required to identify B12 deficiency? These would include #1 serum B12 test, #2 RBC folate test, #3 a serum homocysteine test, and #4 a methylmalonic acid test. If you have a copy of these results, please share the numbers with us. (B12 deficiency can also manifest with neurological symptoms.)

What other testing has been done? Iron, magnesium, zinc? Thyroid hormone testing? Liver? Kidneys? Testing for gluten sensitivity (celiac disease), which can also cause neurological symptoms?

To answer your question, "Does this sound like MS?"… It could be MS; in my opinion (I have no medical background), it is more likely to be one of the many other possibilities. Work with your doctor; try to be patient; it is often a long journey to an MS diagnosis (if that is your eventual diagnosis).

[chezy]

Hi Lynda,

I have been like this for 2 years. My first attack was 2 years ago, my right leg started to burn and went numb from my abdomen to my toes. I burnt myself because I didn't realise how hot the bath was lol! This lasted for about 6 weeks and went away,I've been feeling tired for the last 2 years really but put it down to having two munchkins and starting a new career. Last October my left index finger started to itch really bad and that's when pain came. It radiated from my hand, up my arm and down my chest. I honestly thought I was having a heart attack!! The doctor having said I had shingles the time before diagonosed that again. It was still painful and went numb and I could use my left hand. It locked a few times which scared the hell outta me. It's still numb now and when it gets cold it starts spasming and I often all electric shocky. I had a blood work done and all came back normal, no infections were found which is why I was sent to the neurologist.

[lyndacarol]

I have been like this for 2 years. My first attack was 2 years ago, my right leg started to burn and went numb from my abdomen to my toes. I burnt myself because I didn't realise how hot the bath was lol! This lasted for about 6 weeks and went away,I've been feeling tired for the last 2 years really but put it down to having two munchkins and starting a new career. Last October my left index finger started to itch really bad and that's when pain came. It radiated from my hand, up my arm and down my chest. I honestly thought I was having a heart attack!! The doctor having said I had shingles the time before diagonosed that again. It was still painful and went numb and I could use my left hand. It locked a few times which scared the hell outta me. It's still numb now and when it gets cold it starts spasming and I often all electric shocky. I had a blood work done and all came back normal, no infections were found which is why I was sent to the neurologist.

Numbness/tingling/pain in the legs/feet and arms/hands is a common symptom in many conditions and is the textbook definition of "peripheral neuropathy." 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

Personally, I would start by asking the GP for a vitamin D test. The typical cost through a clinic is about $45-$50 and covered by most insurance, since your case would medically indicate it. If insurance doesn't cover it, the cost is reasonable. (By the way, feeling too easily fatigued, muscle weakness,, and general aches and pains can be symptoms suggesting low vitamin D levels. However, there are many people with low levels who have no recognizable symptoms. Your doctor needs to measure the vitamin D level. If your level is low, it is easily remediable – but establish your vitamin D status first… Discuss the situation with your physician… Don't just start taking these supplements on your own.)

Through GrassrootsHealth there is even the option to get this test done on your own in the month of March – http://www.thisisms.com/forum/general-d ... 27499.html (It requires a blot of blood obtained with a finger pinprick.) You receive results within a week – a vitamin D level in the upper half of your lab's reference range is more desirable than in the lower half. (This range is usually about 30-100 ng/mL.)

Many experts believe that it will soon be as important to test Vitamin D status as it is blood pressure, glucose, or cholesterol level today.

Once you and your doctor have thoroughly ruled out vitamin D deficiency, move on through the list from the University of Chicago. Please let us know how your investigation and tests go. (Sunshine makes vitamin D in the skin – everyone needs vitamin D, so get those 2 munchkins out in the sun this summer! But give them 15 minutes in the sun before you slather on sunscreen. Sunscreen prevents the sun's rays from reaching the skin and making vitamin D there.)

[chezy]

Hi. Checked my b12 and it is 400 so not low at all, liver, and thyroid both at normal levels and so is my vitamin d. I eat alot of cheese and dairy products along with meat so it's not a vitamin deficiency?
Been checked for peripheral neurophy and that has been ruled out. As much I don't want it to be MS if it is then it's early stages.

Did you get diagonosed early? Thank you for the information.

[lyndacarol]

Hi. Checked my b12 and it is 400 so not low at all, liver, and thyroid both at normal levels and so is my vitamin d. I eat alot of cheese and dairy products along with meat so it's not a vitamin deficiency?
Been checked for peripheral neurophy and that has been ruled out. As much I don't want it to be MS if it is then it's early stages.

Did you get diagonosed early? Thank you for the information.

I urge you to read 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.): 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).

… We believe that the "normal" serum B12 threshold needs to be raised from 200 pg/mL to at least 450 pg/mL because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/mL.

At this time, we believe normal serum B12 levels should be greater than 550 pg/mL.…

We commonly see patients with clinical signs of B12 deficiency who are not being tested. Others who are being tested are not being treated because their serum B12 falls in the gray zone [between 200 pg/mL and 450 pg/mL]. This error results in delayed diagnosis and an increased incidence of injury.

According to these authors, your B12 test result of 400 pg/mL falls in the "gray zone" and may not be optimal for you.


Elsewhere 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.”

page 253: “Humans and other mammals are all born with serum levels of about 2,000 pg/ml, which decline gradually throughout life.” (J.V. Dommisse)

In Japan, a B12 level below 500 is considered a deficiency and is treated.

Meat, poultry, fish, eggs, cheese, dairy – animal-based foods – are the only dietary sources of B12; it sounds like your intake is adequate, but the pathway to the cells (where it is needed) is complicated and can be disrupted in more than a dozen places. It is possible to have a functional deficiency in the cells/tissues.

You have had the serum B12 test. Thorough, initial testing to rule out a possible B12 deficiency should have included these 3 tests: a serum homocysteine test, a methylmalonic acid test, and an RBC (red blood cell) folate test. Do you have the number results for these tests?

As for my personal MS history, I was diagnosed with MS more than two years after symptoms began. (However, like many other MS patients, in retrospect, I recall symptoms much earlier in life that I simply dismissed as something else.)

[chezy]

My levels are 99 for iron and 8.1 for folate. Everything else is halfway or over halfway. Not sure about the other 2 unless they are under a different name. Will look into the book but I do get alot of my b12 from my diet. .