I've been reaching out to my list groups online for suggestions as to what might be going on with my health. And one thing that's come up more than once is Vitamin B12 Deficiency - which can become VERY serious. I kept brushing off the suggestion, but, now I'm going back to it. And I think that the very reason I kept thinking it was unlikely is the exact same reason my Dr thinks it's unlikely - and yet, we've never really proven beyond a shadow of a doubt that it isn't this.
Here's my explanation of why we think it's unlikely - and why it's still possible - and why I asked the nurse to talk the doctor into ordering another test for my behalf.
In 2004, after my PE; I was tested for a wide range of clotting disorders. One of which, was High Homocysteine levels. Homocysteine is a byproduct of a condition of Vitamin B deficiencies... untreated, it can increase your risk of clotting (go figure, albeit only very slightly - not enough to cause clots without other risk factors); and even worse, can lead to heart disease and heart attacks. So, it's important to manage even if it isn't the 'root' of my clotting issues. Treatment is to take B6, B12 and Folic Acid. Very inexpensive, over-the-counter vitamins. Easy-peasy. Although high homocysteine levels in and of themselves are not inheritable, but instead 'acquired' - there are some underlying conditions that can be inherited that cause the body not to process the vitamins from diet & supplements that can be at the heart of the issue.
Later, I was also diagnosed with Protein C Deficiency which is an inherited condition. So - since my father had already passed, my mother agreed to get tested for the clotting conditions - with the thought that if she does have them, then my brothers & sister should also get tested; if she does NOT have them, then I obviously inherited them from my father - and since my brothers & sister have different fathers, then they aren't at risk. She didn't have the Protein C Deficiency. However, when she asked for the other clotting factor test, she'd forgotten that it was high homocysteine levels - instead she asked to be tested for Vitamin B deficiencies (the part she remembered).
And go figure, she had B12 deficiency - severe. She started on B12 shots immediately... AND she had some improvement in her undiagnosed medical condition (at the time). A lot of improvement. In fact, some of the symptoms were symptoms my sister also had at the time. So she got tested for B12 deficiency - which she also has. In fact, over time, more than a dozen of my first cousins have also been tested and also found to have B12 deficiency. Now remember, dozen seems like a lot, but I have over 40 first cousins, so this is only like 25% of them. But basically, 100% of the ones tested have all tested positive. And every last one of them is taking B12 injections.
So, I go back to my Dr at the time and ask them the difference in treatment... if we have the same condition - why are they on injections & me on supplements? His response was that a lot of people aren't able to absorb the nutrients from the supplements, so if they have B12 deficiency the assumption is to inject directly into the blood stream. So, I asked him how he knows that I'm absorbing the nutrients from my supplements. He thought that was a good question. So, almost a year later, they re-tested my homocysteine levels - which were now normal.
In the meantime - Mom had also had a B6 test for when she had been doing her screening for B vitamin deficiencies - and was found to have toxic levels. For several months she had gotten on me about the fact I was taking B6 daily and that I should get tested for toxicity. I talked to four doctors about it and every last one did NOT order the test because "it's nearly impossible to get toxicity with one over-the-counter supplement a day". I finally convinced the fifth doctor to order the test. Guess what, I was toxic.... not found until early 2007. So, I stopped taking the B6 supplement. I worried a little that my homocysteine levels would climb. But again - was told that I didn't need to be monitored. I asked why not.... because homocysteine is not a result of a deficiency in ALL 3 nutrients, it's more a "symptom" of any one of multiple deficiencies. Finally, they did test me again, and again, I'm normal (this is good).
Flash forward - my symptoms are something that are typical with a serious B12 deficiency; and I know for a fact that my internist was worried about it - because again he ran another homocysteine level test - again I was normal. But, here's the kicker... I've NEVER gotten a B12 test. They've always "assumed" that if my homocysteine is normal, I'm not deficient. "It's nearly impossible that I could have normal homocysteine levels AND a B12 deficiency" - note the "nearly" in there. Been there before... proved them wrong before.... willing to do a simple blood test "just in case".
So, I figure, if my Internist can insist on a sixth MRI in two years 'just in case'; I feel pretty comfortable in asking for a simple inexpensive blood test 'just in case'. If I'm wrong, I'm out $12. And, this is a stretch, as it would be highly unlikely for it to happen. BUT, I'm willing to turn over this stone and just make doubly-sure.
If this is what it is, it would be simple to exchange the b12 pills for a self-injecting of liquid B12. I've given myself shots before -- daily shots at that; and this would be only monthly. Problem is that nerve damage caused by B12 deficiency (the most common cause of my symptoms) is permanent. However, I can halt the progression of the condition in its tracks immediately and prevent all further damage.
So, a little bit of hope is churning up that that little assumption that homocysteine levels are sufficient to rule out B12 deficiency in me personally - is false; and that just maybe, we've stumbled onto a solution. Cross your fingers for me!