Friday, April 27, 2012

Awesome news

I have been really stuggling for years with fatigue and chronic pain.

I have all the symptoms of MS, except I don't have it.

It could then also be b12 deficiency... but every b12 test I have started six months after I started taking b12 pills and/or sublinguals. The tests always came back negative.

The reason I was taking the pills was because after my pulmonary embolism, I was tested for hyperhomocystienemia... which is a fancy name for some type of b vitamin deficiency... my mom couldn't remember the fancy name so she went in to get tested for b vitamin deficiency. This led to over twenty individuals in my immediate and extended family getting diagnosed with b12 deficiency. They all had similar symptoms to I, all got put on b12 injections and all found near immediate relief.

I talked to my doctors to find out why I was taking the pills, but they got an injection. The answer was that if you test low on b12 specifically, there is a better chance your body can't absorb it... often related to genetic factors and runs in families. So if you take pills but your body can't absorb the nutrient, then it doesn't fix the deficiency and doesn't resolve the issues. Which was right where I was.

I read several studies that indicate the longer you have been sick, it sometimes takes more b12 to treat symptoms. So I started taking mega doses of the pills. For about $90 a month I improved my symptoms by about 10%. Awfully expensive for only a little improvement. It did give me the longest period of time with improvement to my symptoms... but I didn't feel like I was ever going to gain back the rest of my life if I didn't figure it out.

Back to reading research papers. And I found some that indicated that if you are taking b12, but not processing it properly that the standard test might be getting bad results because it really measures incoming b12, not the amount of b12 that your body converted to a useable form. Which comes back to why they don't give patients with b12 the pills... because it would throw off the test results for further testing that might be needed to measure the effectiveness of the treatment.

But since I was never diagnosed with b12 deficiency, no doctor would allow me to try the injections. Last year at this time I stopped taking the supplements. It takes seven years or more for the body to eliminate b12 from the liver. I figure that eventually I should be able to get a positive test result for b12 deficiency if it finally got out of my system... thinking that it might be the only way to finally get the same treatment that the rest of my family got.

Went in to the doctor today for a regular follow up and I mentioned that things were getting worse again. That it had been a year since I had taken any b12. I mentioned that I was still convinced that I thought I would do better on the injections... and almost fell out of my chair when he agreed to prescribe the injections. My last b12 test came back drastically lower than the previous ones, but still in the normal range. He said that it would be off label treatment, but its not like the injections can cause any harm as side effects are extremely rare... and it is impossible to overdose on b12. So its not like it would harm me. It might help, either because I am right or maybe simply because of the placebo effect. Honestly I wouldn't care if it helps... regardless of what it takes.

So, there's at least hope that my trials and tribulations might be coming to an end. I know I shouldn't talk like that and I shouldn't get my hopes up... but I really, really want to get better. REALLY REALLY want it bad!!!

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