disabled vet recently diagnosed

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disabled vet recently diagnosed

Postby Bcisme » Sat Oct 17, 2015 2:54 pm

Hi everyone, my name is Bryan. i've finally decided to look around for a venue to talk about this a bit.

I am 35 years old, and left the army 2 years ago with a medical discharge and received a 90% rating from the VA after 16 years. i have disk disease and arthritis in my spine, foot knee and neck problems etc.... and sleep apnea. for years ive battled with chronic pain all over my body, fatigue, heat intolerance etc.... so as you can imagine ive spent some time wondering what was going to happen to me next.

In early May of this year, i woke up one morning with my right arm, hand, and torso numb and tingling, with pain in my arm and fingers that slowly progressed for a couple days so i went to the ER, where after 7 hours and lots of poking with a needle, i was told i slept on my arm wrong and was sent home. a few days later it was still getting worse, with burning pain and tingling running through my arm into my fingers. another ER trip got me a neurology referral. so by this time after a couple weeks the pain had gotten bad enough for me to have trouble lifting my arm above my shoulder. Loma Linda immediately did an mri and found lesions in my brain and C2. they ordered more mri's with/without dye and a week later it came out the same. by this time i was thinking some kind of neuropathy, but was told it was a demyilinating condition. thats when i started thinking MS. so after a lumbar puncture i got a call to come in to discuss results. 2 months had gone by now. My doctor, who i had been seeing all this time was in fact the chief of neurology who told me it's RR MS and i've been on copaxone for about 3 months now. ive gotten some relief in my right shoulder, but the arm/hand pain is still there with minimal relief. often horrible pains like someones trying to break my arm or rip my bicep off or wring it to pieces. at first it was all at once. I also have lhermitte's sign and often, as i type actually, i get strange electric pulses throughout my body.

kind of a tough place to be at 35, going from 10+ mile runs to my legs and body aching just because i got dressed and walked out of the house. but at least now i have an answer for the things that plagued me for years that no doctors could understand or explain.

I look forward to talking with others and learning what your experiences are.
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Re: disabled vet recently diagnosed

Postby lyndacarol » Sat Oct 17, 2015 4:06 pm

Bcisme wrote:Hi everyone, my name is Bryan. i've finally decided to look around for a venue to talk about this a bit.

I am 35 years old, and left the army 2 years ago with a medical discharge and received a 90% rating from the VA after 16 years. i have disk disease and arthritis in my spine, foot knee and neck problems etc.... and sleep apnea. for years ive battled with chronic pain all over my body, fatigue, heat intolerance etc.... so as you can imagine ive spent some time wondering what was going to happen to me next.

In early May of this year, i woke up one morning with my right arm, hand, and torso numb and tingling, with pain in my arm and fingers that slowly progressed for a couple days so i went to the ER, where after 7 hours and lots of poking with a needle, i was told i slept on my arm wrong and was sent home. a few days later it was still getting worse, with burning pain and tingling running through my arm into my fingers. another ER trip got me a neurology referral. so by this time after a couple weeks the pain had gotten bad enough for me to have trouble lifting my arm above my shoulder. Loma Linda immediately did an mri and found lesions in my brain and C2. they ordered more mri's with/without dye and a week later it came out the same. by this time i was thinking some kind of neuropathy, but was told it was a demyilinating condition. thats when i started thinking MS. so after a lumbar puncture i got a call to come in to discuss results. 2 months had gone by now. My doctor, who i had been seeing all this time was in fact the chief of neurology who told me it's RR MS and i've been on copaxone for about 3 months now. ive gotten some relief in my right shoulder, but the arm/hand pain is still there with minimal relief. often horrible pains like someones trying to break my arm or rip my bicep off or wring it to pieces. at first it was all at once. I also have lhermitte's sign and often, as i type actually, i get strange electric pulses throughout my body.

kind of a tough place to be at 35, going from 10+ mile runs to my legs and body aching just because i got dressed and walked out of the house. but at least now i have an answer for the things that plagued me for years that no doctors could understand or explain.

I look forward to talking with others and learning what your experiences are.
Welcome to ThisIsMS, Bryan.

We are glad to meet you in the Introductions forum; there is also a forum dedicated to Veterans and MS (veterans-and-ms-f51/) where you may find people with similar military experience. Most of us read new posts no matter the forum.

As you must realize, a person's symptoms are not all due to one condition; different problems can develop at different stages of our lives. The chronic pain, fatigue, heat intolerance you first described are nonspecific and are common to many conditions.

Likewise, the numbness/tingling/pain in your arms and hands (a.k.a. peripheral neuropathy) are common to many diseases – one possibility of which is B12 deficiency. In my opinion (I have no medical background), the first thing the doctors should have ordered is 4 blood tests to screen your vitamin B12 level – or maybe this was done (B12 deficiency is VERY common in the US population, and any person at any age can develop a B12 deficiency. By the way, even l'Hermitte's sign can be a symptom of B12 deficiency.). Rather than refer you to neurology, the ER doctors should have ordered #1 a serum B12 test (or the newer, more reliable HoloTc test, if it was available at Loma Linda); #2 an RBC folate test; #3 a serum homocysteine test; and #4 a methylmalonic acid test.

I believe that too often, if you see a specialist about a problem, he will find a solution only in his specialty: if you see a neuro, he will only see the problem/solution in neurology. I have read: "doctors are experts in, and only test for, those parts of the body in which they specialize." If your GP or neuro did not order B12 testing, you might discuss the possibility with your GP. (Do not take vitamin B supplements before testing, as this will skew the results.)

If one of your doctors did order these tests and you have the actual number results, I would be curious to know those numbers. Also, I am curious if, during your 16 years of service, you were deployed overseas.

We are glad you found us, we look forward to talking to you, too.
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Re: disabled vet recently diagnosed

Postby Bcisme » Sat Oct 17, 2015 5:17 pm

they have run a plethora of tests on me this year. my B12 was 418 in april, just prior to the events leading to the dignosis. my Vitamin D is really low.

i have been overseas many times.
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Re: disabled vet recently diagnosed

Postby lyndacarol » Sat Oct 17, 2015 8:36 pm

Bcisme wrote:they have run a plethora of tests on me this year. my B12 was 418 in april, just prior to the events leading to the dignosis. my Vitamin D is really low.

i have been overseas many times.
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.


On page 11, these authors even 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.”

Your B12 test results of 418 pg/mL fall in the "gray zone" according to the authors. Many experts consider the cutoff for a deficiency to be set too low in the US. In Japan, any result lower than 500 pg/mL is considered a deficiency and is treated.

As for overseas deployment… I have a very "off-the-wall" hypothesis: I believe that food served in the mess halls and MRE's is high in carbohydrates and has residues of the herbicide, Roundup (which works by tying up minerals and making them unavailable). The mineral foundation for vitamin B12 is one of the main targets of Roundup (thereby making much of the B12 unavailable and causing a deficiency). By the way, Roundup disrupts enzymes which are involved in the regulation of vitamin D – I suspect that this could be responsible for your very low level of vitamin D.

I encourage you and your favorite doctor to investigate a vitamin B12 deficiency THOROUGHLY – since you have had the serum B12 test, ask for a serum homocysteine test and a methylmalonic acid test. If these 2 tests results are elevated, it is a further indication that your B12 is low and probably needs to be treated. But discuss this situation with your doctor.

We wish you all the best. Please keep us posted.
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Re: disabled vet recently diagnosed

Postby Bcisme » Sat Oct 17, 2015 10:18 pm

yea ive read the same thing, 418 is just way to low. i have decided i need to get onto a regimen to boost my vitamin B12 and vitamin D levels, however these had nothing to do with my diagnosis. the lesions seen on the MRI and the spinal tap with results led to the diagnosis. i was told it took 2 months of testing and appointments because they had to rule everything else out. my Albumin levels according to my lab results are 4440 on a scale of 7-36.

i cant tell you how many mre's, t rats, heater meals, mess hall food blah blah blah ive eaten over the years, especially overseas. there was a time when i had all the mre's memorized and was the go to guy if you were looking for a specific item. (most people want to know where the candy is) the 2 tests you are referring to, whats the specific item you are asking about? i can dig through these pages and pages and see if its there or not.
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Re: disabled vet recently diagnosed

Postby Scott1 » Sun Oct 18, 2015 3:15 am

Hi,

As you been in so many locations you should get checked for mycoplasmas, chlamydias, borrelia, babesia, lyme and, of course, EBV. Infections can scavenge amino acids and alter the function of lipids and cell respiration. Make sure you not compounding your problems.

Regards,
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Re: disabled vet recently diagnosed

Postby lyndacarol » Sun Oct 18, 2015 12:11 pm

Bcisme wrote:yea ive read the same thing, 418 is just way to low. i have decided i need to get onto a regimen to boost my vitamin B12 and vitamin D levels, however these had nothing to do with my diagnosis. the lesions seen on the MRI and the spinal tap with results led to the diagnosis. i was told it took 2 months of testing and appointments because they had to rule everything else out. my Albumin levels according to my lab results are 4440 on a scale of 7-36.

i cant tell you how many mre's, t rats, heater meals, mess hall food blah blah blah ive eaten over the years, especially overseas. there was a time when i had all the mre's memorized and was the go to guy if you were looking for a specific item. (most people want to know where the candy is) the 2 tests you are referring to, whats the specific item you are asking about? i can dig through these pages and pages and see if its there or not.
To boost vitamin B12… First understand that B12 is only found in animal-sourced foods, like meat, poultry, fish, eggs, cheese, and other dairy products. The journey from the mouth to the cells in the body (B12 is used in EVERY cell in the body!) is a complicated trip requiring many proteins, enzymes, etc. (if just one thing goes wrong, the B12 cannot make it to the cells).

If you eat an adequate supply of B12, but the level in the blood is still low, it may be necessary to supplement – but please discuss this with your doctor and do not simply just start. The easiest way to supplement is taking B12 tablets which are dissolved under the tongue (called "sublingual" tablets) – B12, in the form of methyl-cobalamin, is more easily absorbed by the body (and is preferred to cyano-cobalamin, which is the cheaper form most often found listed on the label). Vitamin B-12 is water-soluble, any excess that your body does not use is flushed out in urine, it is not toxic.

To boost vitamin D… Since you mentioned Loma Linda, I assume you are in "sunny" Southern California. I think exposing your skin to sunshine is preferable to swallowing vitamin D gelcaps.

You mentioned lesions… Lesions are NOT specific to MS; lesions are found in many conditions, including B12 deficiency. Something in the spinal fluid called "oligoclonal bands" (a.k.a. o-bands) is also found in more conditions than just MS –o-bands can also be found with B12 deficiency. Your doctors are correct – the MS diagnosis can only be considered AFTER other more likely conditions have been ruled out.

About the 2 tests… The homocysteine test is often listed as Hcy. It is measuring homocysteine, which is an amino acid.
The methylmalonic acid test appears as MMA on the test result page. Both of these tests are ordered individually; they are not part of a routine, standard panel of tests.


In August, NHE gave a very thorough, scientific explanation Hcy and MMA:
undiagnosed-f54/topic26635.html#p235890
Homocysteine and methylmalonic acid are biomarkers that indicate how well your body is utilizing B12. However, there are caveats that need to be considered in interpreting the test results.

The methionine synthase enzyme uses B12 (or more specifically, methylcobalamin) as a cofactor to transfer a methyl group to homocysteine converting it to methionine. As such, homocysteine is a toxic amino acid that can build up when B12 is low. It can also build up when either folate or vitamin B6 are low as well. So high levels of homocysteine are not specific to low B12, though they are a sign that something's gone awry with the methylation cycles and that it could be a B12 issue. High levels of homocysteine increase the risk of cardiovascular disease such as high blood pressure, stroke, heart attack and arrhythmia. They're also associated with an increased risk for dementia.

Methylmalonic acid can also build up when B12 is low. In this case, adenosylcobalamin is a cofactor for the methylmalonyl CoA mutase enzyme in the mitochondria that's used in the pathway which converts proprionic acid, a left over from odd chain fatty acid metabolism, into succinate so that it can be used in the Krebs Cycle. However, methylmalonic acid levels can be normal if one is taking antibiotics at the time of testing.

See figure 4 in the following paper for an overview of the two pathways using B12.
http://www.jbc.org/content/288/19/13186.full.pdf
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