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Old 12-22-2008, 03:53 PM
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Originally Posted by grissomcc View Post
It is frustrating when you cannot get a diagnosis. I have been labeled a psych case on many occasions when the docs could not figure me out. My saving grace was in going to a rheumatologist. He diagnosed me with fibromyalgia and complex regional pain syndrome II. Neither of these would show up in a blood test and are pretty much diagnoses of elimination (when your pain is real but there is no test that shows why). Some of your symptoms sound like CRPS II. Hope this helps.

Definition from NIH


The key symptom of CRPS is continuous, intense pain out of proportion to the severity of the injury (if an injury has occurred), which gets worse rather than better over time. CRPS most often affects one of the extremities (arms, legs, hands, or feet) and is also often accompanied by:

* "burning" pain
* increased skin sensitivity
* changes in skin temperature: warmer or cooler compared to the opposite extremity
* changes in skin color: often blotchy, purple, pale, or red
* changes in skin texture: shiny and thin, and sometimes excessively sweaty
* changes in nail and hair growth patterns
* swelling and stiffness in affected joints
* motor disability, with decreased ability to move the affected body part

Often the pain spreads to include the entire arm or leg, even though the initiating injury might have been only to a finger or toe. Pain can sometimes even travel to the opposite extremity. It may be heightened by emotional stress.

The symptoms of CRPS vary in severity and length. Some experts believe there are three stages associated with CRPS, marked by progressive changes in the skin, muscles, joints, ligaments, and bones of the affected area, although this progression has not yet been validated by clinical research studies.

Stage one is thought to last from 1 to 3 months and is characterized by severe, burning pain, along with muscle spasm, joint stiffness, rapid hair growth, and alterations in the blood vessels that cause the skin to change color and temperature.

Stage two lasts from 3 to 6 months and is characterized by intensifying pain, swelling, decreased hair growth, cracked, brittle, grooved, or spotty nails, softened bones, stiff joints, and weak muscle tone.

In stage three the syndrome progresses to the point where changes in the skin and bone are no longer reversible. Pain becomes unyielding and may involve the entire limb or affected area. There may be marked muscle loss (atrophy), severely limited mobility, and involuntary contractions of the muscles and tendons that flex the joints. Limbs may become contorted.
Strangely enough a doctor I went to said I had fibromyalgia, too. But then again, when I had tetanus, which also takes away all of ones strength, the doctors at the ER said I should read about fibromyalgia... you can't see tetanus and there's no test for it, so you don't look particularly sick if the seizures aren't hitting, and once they've hit there's a strong desire to never have to feel that intense pain again.

Okay, so while my B12 test levels were "normal" by American lab standards at that time, after I had a LOT of B12 while I had tetanus I had a huge change in my unrelated health: pain I'd had in my thighs from peripheral neuropathy went away, my memory improved, my hand stopped shaking and it made sooooo much difference to my handwriting. Tingling went away, oh, and tinnitus that I'd had began to be gone for long periods of time.

So, what I think is that the B12 test is tricky because the low normal in the US is so low that it allows people to have serious symptoms... and without it being B12, according to the tests, various drugs are prescribed, as for instance those for "restless leg syndrome" -- I had the symptoms of restless leg syndrome, but when I had a lot of B12 they went away.

If you want to see if low B12 is the problem, get the methylcobalamin and take it for a couple of months. If you use one lozenge a day for a month that's equal to a B12 shot. If the problems you are experiencing are related to low b12, then in two or three months the problems should lessen.

You could try the 5mg lozenges, which would add up to about 5 B12 shots a month... I think that would be a better choice because then in a month or 6 weeks you could have enough improvement to know the problems were related to low B12.

B12 is not dangerous, so making your our study of yourself is a good idea without being a worry.
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Do you know the symptoms of low vitamin B12.... ?
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