This is sort of on-topic, Abby, so please indulge me. I did some research at the local university after my B12 deficiency. I found unbelievable amounts of detailed "doctoring" a century ago. People like Addison, who truly looked at every angle of a disease and documented it. I agree with Alice. There is not as much looking and thinking now days. And putting pieces together. Dr. Andrew Weil said in a lecture I saw over a decade ago that pathophysiology is not even taught in medical school anymore. There's no time for it. How sad.

Sure seems like a lot of us here are - as Alice has said - zebras.

Annie

Annie,

(forgive me if this is a bit off-topic).

B12 deficiency was sort of my first clue to understanding my illness.

No, I do not personally have B12 deficiency. But, quite a few years ago (shortly after I finished my fellowship in hematology), I was called in the middle of the night to see a patient who the resident thought had leukemia.

On first seeing her this is what I thought too. she was very pale, slightly jaundiced, with an enlarged spleen. All her blood counts were at ground level and she looked very ill.

On first site her bone-marrow also looked as if she had leukemia, but the more I looked at it, the more I realized that this was not what she had. It looked more and more like she had severe B12 deficiency such as I have never seen before. ( I had to open all the atlases and text-books to find similar BM findings, and be convinced in what I thought).

It turned out that she was not only a vegetarian, but also never went to see her physicians. She did feel a bit tired, but only when she started to have bruising and collapsed was she brought into the hospital by her family.
I realized that I was seeing the natural history of an illness that should no longer have a natural history. I also realized why it is called "pernicious anemia". Until the discovery of vitamin B12 it was a fatal illness, just like leukemia. I knew this theoretically, but now saw it in front of my own eyes.

Within a few months of receiving treatment with B12 she fully recovered, and even her liver and spleen went back to normal size. I went back to the original descriptions of pernicious anemia and found it all described.
I wrote a case report about it-Pernicious anemia-revisited (as I thought it is important that other physicians will know how to recognize it), but it was not accepted.

When I was nearly bed-ridden and required nearly constant respiratory support, I started thinking why so many neurologists told me that my symptoms were "impossible" and that they have never seen something like that. And I thought to myself that maybe (just like me with the patient who had pernicious anemia), they are seeing the natural history of an illness that rarely has a natural history nowadays.

So, I asked my husband to find me everything that was written about myasthenia before there was effective immunomodulatory treatment.
This is how I got to Osserman, Mary Walker etc. Who have indeed describe each and every one of my "impossible" symptoms.

In fact I recently came across a paper (and found it quite amusing) that one of my "impossible" symptoms was called the "Mary Walker Phenomenon". This phenomenon was required (then) in order to confidently make the diagnosis of MG. It is probably not seen much now, because patients receive effective treatment long before they reach this state. And also because physicians are many times much less observant and meticulous in their examination than when they had very limited tools other then their own clinical skills, so probably wouldn't even notice it, if patients did have it.

I was thinking if I should send this paper to the neurologist who told me it is "impossible" but then decided not to.

So, in a way you can say that B12 deficiency probably saved my life.

Abby, Sorry if my question for Alice or Annie hijacks your thread!

I start my day with Mestinon and a nice hot cup of coffee or two!! It makes a world of difference in my morning.

Alice or Annie, Do either of you know of any medical literature showing a direct correlation between B12 deficiency? I was dx'd with B12 deficiency last June and went on to be dx'd with sero-negative MG not long after.

Thank you,
Rachel

http://ajpendo.physiology.org/conten...1/E31.abstract

Abby, Read that.

And because of the darn medical journals, I can't put an article on here, at least yet, that shows this info:

80% of ACh antibodies are cell bound and 20% are circulating antibodies.

As I suspected. If the little suckers are having fun destroying your cells/tissues, then why would they have any interest in being drawn out by a lab tech to engage in a test?!

Abby,

I also find coffee more helpful than Mestinon for my symptoms currently. It hasn't always been this way, but I am now taking 1/8th of a Mestinon pill every day and a cup of coffee in the afternoons (or a cup of tea if my symptoms are only mild).

I prefer the coffee to Mestinon when my symptoms are mild. The Mestinon makes me feel horribly nervous.

I think it is the heat that reduces my symptoms somehow. When it gets cold again I expect that I will be back to taking more Mestinon and having lots of bad days.

I am going through the diagnosis, probable, possible, see another doctor, eye rolling, etc. that almost everyone that is seronegative goes through. But thought these memories might be interesting to people who are drumming up things from childhood. By the way, my aunt looked and acted very much like the woman in the Mary Walker clip and my father had MG diagnosed at age 80, my aunt, his sister, died at 42 and I believe she was untreated. I am 65, but here's what I remember from my childhood: at 4 I used my weak r eyelid to tell left from right and school pictures were a nightmare due to having one eye closed for many of the shots, I was extremely active and loved the out of doors, but always had scratches and scabs, especially on my elbows and knees, I was usually king of the mountain and hung by my knees from the merry go round but not fast or the best at jump rope and too stiff to do acrobatics for the first grade circus, I had no thirst, could play tennis all day in the summer without drinking and win, in swimming I was first across the pool if everyone was not allowed to kick and last if we couldn't use our arms, drove the swim instructor crazy and unlike my brothers, not fast enough for the swim team, played high school basketball for four years, shortest on team, handicapped by height, lack of speed, jumping ability, aim (left eye dominant, right handed). Was on the traveling team all four years, which did not mean I got to play, only that I was determined reliable and yelled loudly from the bench. It was the only sport for girls. I have been on pyridostigmine for less than a year which was like magic to begin with, but requiring more until I need more help than I can get without another work up scheduled for October. Maybe it's just as well, because I only recently realized that my problem could be CMS, although I am 65, and of course this is important for all blood relatives. Thanks for being here and bringing some of this research to our attention. Besides the seronegative testing, a lot of the eye rolling is because I am so strong and at the same time from the same office the diagnosis code reads lethargy, malaise, and fatigue. Hopefully this time someone will have some compassion and good sense! I am just as competitive as I was when I was a child, I am just losing.