Got my "MS-mimic" blood test results back. I'm really wondering if that MS specialist neuro I saw last week cares in the least about getting things right. He seems to have a number of wrong ideas. He thinks that the McDonald criteria REQUIRE MRI lesions for diagnosis, that Lhermitte's is not Lhermitte's if it doesn't shock you down your spine, and now he appears to have gotten the formula wrong for sed rate.
My sed rate was 33, which was flagged high. He said that for women, they take your age, divide by two, and add 10, which in my case would mean the ESR would be normal up to a value of 36 (I'm 52 years old).
However, when I poke around online, I see that the formula appears to be take your age, add 10, THEN divide by two, which for me yields an upper normal value of 31. Thus, this should be interpreted as high. (I haven't been sick.)
I don't really care because I know lots of things can raise the ESR, but my confidence in that neuro, already low, just fell another 33 points!
Quix or anyone--is he wrong, or are there two versions of that ESR formula??
My B-12 was 472. He said that while this is normal, he likes to see 600 to 900 and suggested I take 1000 mcg supplement. Still, he didn't imply that my B-12 level was the cause of my symptoms. (For the full account of my visit with him, see my thread "Is this a record or what!" awhile back.)
Celiac, Lyme, and homocysteine were all normal. He said he was going to run the ANA (I think--anyway, he mentioned lupus) but he didn't. However, I had three dead normal ANAs in the early 2000s.
It really can decrease your confidence in your Dr. something explained is in complete opposition of what you have learned to be fact. So your feelings are understandable.
I can't speak to those levels and the lab flag. Only thing I've experienced is that not all flags are cause for great worry depending on what the Dr. is looking into. And, those ranges are averages, and not everyone fits them to a T.
Sometimes when something flags on a lab, the Dr. is tipped off to look into another direction. So, sometimes its a good thing.
I'm thinking your Dr. is satisfied with the accuracy of your MRIs not showing lesions. MS is not typically lesionless, though there are reasons they may not be seen.
Hi Shell, thanks! I am not worried about the sed rate. Just about that doctor's lack of accuracy on so many things!! Thanks for the confirmation about the Lhermitte's.
I have not gotten a brain MRI since 2003, and those past (four) MRIs did show lesions--but small and nonspecific ones. Could have been MS, but could have been other things too (I'm a migraineur). Nothing periventricular.
This doctor brought up getting a new MRI but kept saying "it's up to you, it's up to you," clearly indicating that he would be doing it only to pacify me, not because he thought there was any chance I had MS. So after thinking it over for a day, I declined. My in-office exam was essentially normal, as it always has been (in fact my reflexes are really low).
I think this is just a really careless doctor. At one point during the visit, he mentioned, "well, you've had 8 or 9 MRIs," and I'm like WHAT! I've had four MRIs. He just says things off the top of his head, it seems, not bothering to care if he's correct. Has he been using the wrong ESR formula his whole life!? For me it doesn't matter, but for another patient it might be important.
My B-12 was 315 or so at Dx. It is considered low in the general population if it is below 200. The MSspecialist that my Neuro sent me to was unhappy if a MS patient was below 500. I take an IM shot once a month.
So I wrote to the doctor, just curious to see what he would say about the discrepancy between the sed rate formula he told me and the one that I found everywhere online. He replied merely that he "was taught" half the age plus 10. I suspect this may be a doctor who learns something once--correctly or incorrectly--and never bothers to question it subsequently.
Best wishes to everyone & thanks for all the replies and help,
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