What Test(s) Were Used to Diagnose Your MG?
What tests did doctors run to diagnose your MG?
Were imaging and bloodwork involved in your diagnosis?
the AChR test came back 4 times what the borderline number is. I'm immune suppressed because of Kidney transplant so that stunned me. I just started on Mestinon in November. Seems to me with an antibody count that high I should be doing plex but I hesitate to ask about it because all my blood vessels are shot from doing dialysis in the distant past and it seems too much like doing dialysis again.
Hey! Never be afraid to ask questions, and use up all the time in your appointments! Have you considered a port to ease the stress and risk to your veins? - Jodi, Team Member
We were really fearing that they were not going to believe the diagnosis and been thrown back into confusion again. No positive blood tests at all. But the SFEMG was totally positive. We salute a persistent and insightful young doctor. Juliana (MG Team Member)
I find younger doctors are more open to new findings, knowledge, and science - Jodi, Team Member 
absolutely. I was fortunate to find an ER doc who knew the latest and acted very quickly to help me through the worst of a crisis.
- now that I have been trying out Mestinon for about 10 days I’m finding inconsistent experiences where sometimes a symptom improves quickly within an hour or two of taking a dose and other times the same symptom seems to only improve slightly after several doses throughout the day. I stopped taking Mestinon for about three days to see if a particular symptom would resolve by itself but so far it appears that the same symptom will become less severe or for a shorter period of time while taking the medicine than it does with no Mestinon taken - but I guess it’s possible that it’s just a coincidence either way. Is this a similar pattern for your MG and Mestinon use?
(i’m waiting to check in with my neurologist at the end of this month so I can give him about 30 days worth of history before I ask him for his opinion on using Mestinon)
That has to be frustrating but good for your for keeping such a good record about your! I found, especially in the beginning of my diagnosis, that keeping track of everything (literally everything) eventually exposed some similarities and helped with triggers figuring out symptoms. That being said, Mestinon has always been pretty reliable with the majority of my symptoms. I can usually count on it improving my swallowing and extremity weakness quickly. The only things it doesn't seem to improve for me are vision and sometimes breathing troubles. Other than that, there really isn't much variability. Also though, I do know that it took me personally (and others I hear) quite a bit of time to figure out timing and correct dosages. That can create a lot of variabilities as well. Maybe that's something you could talk to your doctor about? -Mallory (Team Member)
- thanks for sharing your experience. Actually now that I think about it it’s really just one symptom that improves with Mestinon but doesn’t totally resolve with the dosage I’m now taking. That is when my voice becomes hoarse. It’s actually a new symptom that only started this month as I don’t recall ever having it prior but it appears I need a more frequent dose of 60 mg for this to completely go away.
Two days after I wrote my comments above my eyelid droop became much worse than usual and after taking some Mestinon it had improved greatly in an hour or two. I guess it could be coincidental but I am making note of what symptoms seem to improve with Mestinon and which ones do not and I’ll be sharing this with my neurologist soon. His opinion so far is that all the tests are normal but he realizes that some people with normal testing still have MG and that is why he prescribed the Mestinon to me so I could try it out and see if it improves any of the MG like symptoms. If it does - which it appears to be doing – I assume his opinion will be that I have seron-negative MG.
- it has been helping all symptoms recently. That is fantastic to hear! - Jodi, Team Member
