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02/29/2012 07:02 PM

Myasthenia or myopathy- would like opinions(page 2)

fussybug
 
Posts: 4
New Member

TG

THANK YOU for taking the time to read my posts and write your comments.

I do have a connection to LEVAQUIN. In fact it is listed as an allergy in my records because of the very odd response I had. I was on it for 4 weeks about 12 months before first hospitalization. Are you antibody positive for MG? In what part of the country do you live?

Much thnaks.

FB

Post edited by: fussybug, at: 05/08/2012 11:52 AM

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03/01/2012 06:49 PM
bebes
bebes  
Posts: 309
Member

Somehow I missed the Lyme and MG comments until now. I too have that connection. If you are interested you are more than welcome to read my entries in my diary. My first few entries chronichle my story (they are titled Looking Back and My New Normal). I'm wordy, but since you have that connection you might be interested.

I can tell you I had some early signs of MG that also were interpreted eventually as Lyme and then retroactively to MG. My Lyme doesn't show up as active but then again I haven't had a Western Blot test since 2003. I may pursue my Lyme diagnosis eventually but since MG is life threatening it has demanded all of my medical attention for the last few years. Over the years of searching for answers I had at least 3 blood draws where the doctors were looking for any explanation they could find (too many vials to count) and I would be surprised if ACHR wasn't one of those they tested, but in 2007 I tested positive and that's that. I have MG and have been treated accordingly. But I know it can be definitively diagnosed without the blood test. My specialist had me on IVIG almost before they did the blood draw.

My GP has the best grasp I know of that includes both Lyme and MG but he doesn't treat either one on his own. Personally, I doubt you will find someone who treats one disease and understands the other. There's probably somebody out there (and the prejudices in other parts of the country might be less than around here) and if there is somebody I hope you find them soon.

I'm sure you've considered this but with that many episodes I wonder if you should be left alone.

Welcome to the group and I hope to learn more of your story


03/02/2012 08:39 AM
travelgirl
 
Posts: 8
New Member

I am antibody negative and my nerve studies were also negative (but I was on pyridostigmine).

Currently, I'm living abroad in my final year of medical school but the specialists that I've talked to recommend I return to the US/Canada as soon as possible (during spring break) to get my weakness properly worked up.

I didn't have the typical presentation of MG (my symptoms only started after Levaquin) so they are reluctant to call it that but I am completely dependent on pyridostigmine every 4 hours, so I don't know what else it could be. Diagnostic dilemma.

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