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@Ethereal55
I can't use multi-quote because your entire reply is inside of one big quote box (in post #18 of this thread) so I just copied & pasted it so that I can reply to a few things here:
Sorry about that
That is interesting and I did not know that dry mouth is common in LEMS and I've never had that symptom. In my case, the LEMS was determined to be autoimmune and not paraneoplastic (and I did the lung cat scans for 3-years in a row). I am assuming that you have also checked to rule out cancer (or that you are in the process of doing this)?
Well after initial presentation i requested a CT Scan myself to rule out small cell lung cancer at least at that time because no physician even knew what Lems was lol, they agreed to it because i also have an enlarged spleen so it was a full body CT scan at the time. Nothing was found though. Haven't checked since though, because a) the risk of it being that is so small and would have manifested itself by now probably (more than 2 years in) and b) i kind of gave up on that notion because with my genetics and auto-immune issues now i have elevated cancer risk no matter what so why add to that by ingesting CT radiation on top to chase something very unlikely in my case.
I also had a severe case of Mono/EBV in 2012 that re-activated in 2013 and then immediately led to me having severe POTS (but I was not tested for the autoantibodies until 2016).
Very interesting!!! Seems there are more and more people coming out with this connection in relation to many diseases. Now...have you had flux cytometries done in the past to truly check your immune system? Because i am rather certain that something is off with pretty much everyone's immune system that cannot keep EBV under control like most people can. In my case it turns out i have some kind of T & B Cell deficiency of undiagnosed origin for now. But looking at my numbers it's no wonder my immune system cannot keep EBV in check, leaving it to rage around freely and causing all kinds of AI diseases and worse in the process.
Wish they'd prescribe me Antivirals, but it makes too much sense i guess, plus most doctors won't even acknowledge the phenomenon of reactivations unless you have SEVERE CAEBV (which is mostly fatal) so the milder versions are not a "thing" yet in the West and will take a few more decades to become one, by which point i and many others won't care anymore sadly. What was your EA titer (if you still know that is) and more importantly, how is it now? Under control or still flaring/reactivated?
If I remember correctly, I was given a 60 mg tablet that I cut into 1/8ths so the dose that I tried was only 7.5 mg. I was not able to tolerate it (at that time) and it gave me respiratory depression. Back then, I also got respiratory depression from Magnesium and other things that were calcium channel blockers (but I did not yet know why). My doctor had me try the Mestinon in the hope that it would raise my blood pressure (which was very low) and help w/POTS. I don't remember if I took it w/food but in my case, I don't think that would have made any difference.
Yeah that IS a really tiny dosis. Nevermind then... and no, food only makes a difference in relation to GI symptoms sadly.
Can you still get tested for Sjogrens to rule it in or out? What was your ANA titer & pattern? It sounds like you either did not test for anti GAD65 or that you did and it was negative. I tested positive for GAD65 on the same Mayo Panel where I learned that I tested positive for the Calcium Channel Autoantibodies.
Ana was 1:360 Numa 1 Spindle (a rather rare pattern actually)
Not sure my immunologist even knows what GAD65 is lol, i need to bring it up next time.
Sjogrens ABs were negative a year ago anyway.
At this point i know i have general autoimmunity, so this may not fit into a nice diagnosis box right NOW at this point, but will probably at some point in the near future, or not, because the markers don't always show up. I have so many rare genetic factors going on though that i am just waiting for my exome to be finished, then see what's what (hint: it's not gonna be great lol).
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