Originally Posted by eeyore2

Thanks for your support. I had to go to the ED again this am b/c my stupid G-J tube (which was just replaced Wed) pulled out--they go it back into the 1st part of the small intestine (just outside the stomach, but not far enough to prevent the reflux which triggers my asthma and respiratory muscles issues....and so the vicious cycle continues.

3 days until Hopkins.. me and my doctors are putting alot of aith in them coming up with something, but it the back of my mind I know there is not much they can do and nothing that helps quickly.


I'm embarrassed to admit it, but I am a physician--Nuclear Medicine which is part of Radiology (which means I don't know muchabout neuroimmunology, but I'm expected to anyway). I'm mainly do cancer research at the NCI investigating new "molecular imaging agents". We inject small amount of a drug with a radiolabel targeting to a cancer and imaging the distribution...the most well know is FDG PET scans--we as do bone scans, heart and kidney scans routinely. We get to image the metabolic processes going on in the organ--it is also called functional imaging.

So I guess I should be more calm and rationale about all of this...I understand that this is a complex problem and nobody has the time to make sure that what 1 doctor does doesn't screw up what the other is doing and because I'm inn the medical field I'm expected to pick up the slack. Unfortunately no "priority" treatments and most of the times I get asked what specifically do I want them to do for me.

At the same time they seem to think that I will know when things are getting worse..which I guess it true to some extent..when I was I resident I would not have let someone with an acute asthma exacerbation go home with a peak flow of 250, when it should be 450, but as long as it stays there and doesn't get worse, it is there is not much to do except rest, and used nebulizer treatments...which I can certainly do better at home (with less stress). It seems that unless I am bordering on being intubated (which fortunately, aside from surgery I've never needed), I don't need to go to the hospital.

My GI doc actually said that it was good that I probably have MG b/c then they could put me on Mestinon and things would get better...I had to burst his bubble and tell him that I'd been on Mestinon for 4+ years and things were still getting worse.

The good (and bad) thing is that I can read and somewhat understand the neuroimmuno literature enough to know that some pts response well to treatment and for those who don't, there is no real consencous on what to do. Not many neuros know what to do past Mestionon and steriods . I can understand relectance to put me on any hard core immunosuppressant with my breathing and aspirating issues and I'd rather wait for someone who is comfortable making that decision than work with someone who is hestitant and unsure; although having to wait 3.5 weeks to see someone (with 3 interveneing hospitalizations and 2 ED visits) is a bit absurd..but that is what our health care system is coming to ...from what I've been told in Canada it is worse, and in other places there are no options.

Sorry to go on with this--sometimes I feel like an intruder here b/c I'm supposed to understand what is going on...but I don't