So, sorry! I hope you get the proper tests soon. Dealing with doctors, pharmacies and insurance companies can be SO stressful. Barbel

Hi LB!
Barbel hit the nail - right on the head.
Many of us here - have to go round after round after round - getting our Neuro and GP - on the same page.
And insurance companies? sheesh.
It is aggravating, especially when fighting a chronic autoimmune problem.
You're doing great - hang in there!
- Ross

So hope you are able to get these tests done. Frustrating as heck!

My neuro is a few thousand miles away but I get his tests done there before I come home. Then of course I have to wait for results but I can't imagine why your doctor would mind following through with the tests suggested. Sure hope you can get this all straightened out.

Let us know what happens and good luck with this! Marie

So sorry to hear this, as agree so very stressful , if Mg wasn't enough to deal with. Hope you get the needed tests soon.
Annette

yep ross i agree. getting the drs. on the same page is hard. they see us 10 -20 minutes every 6 months and tell us today your doing great. its like they want to tell you how you feel and dont want to listen to you tell them HOW YOU FEEL. they just dont see us on a daily time table. simply because they are not on the same rollercoaster ride that im on....insurance companies,,,, well what can i say. but i hope that all test will be performed and you can figure out everything. hugs to you

terry

LB,
That's why this page is so great (at least for me).
I bring a concern or new symptom to my neuro and he dismisses it with the equivalent of "I dunno..."
I bring it here - and at least 3 other people (sometimes 5 or 6) have had the same symptom/problem. This has several benefits:
- I learn what to try or think about or check to relieve the problem
- I learn what it probably is, even if no fix for it, it reduces stress
- I learn I'm not the only one who's had it - reduces stress
With MG, reducing stress is a GOOD thing.
Primary care doctors, or General Practitioner doctors have no skills or experience to deal with 'rare' conditions.
Neuros, even good ones, probably have never seen the rare condition at all, have no experience - unless they are in or close to a large population area.
I figure it's up to us to stay informed and don't stress over the doctors who don't have good answers or are lazy. They're just people too. White lab coat or not, people can be lazy or sloppy or both. Whenever a doctor won't order a test, I suspect financial considerations of an insurance company or HMO.
Best wishes and stay informed, don't quit, and don't get too stressed. (if you can).

As an afterthought,
The doctor may want to have the binding test first because, if it's positive - it's definitive and there's no reason to do the other tests.
If it's negative, he may well order some of the other tests.
In my case, the positive ACHr test led to CT scan for thymic tumor (which I did not have - whew). So the results of a test will often dictate whether other tests are needed.
Best wishes and if you can be patient, it will reduce stress. For me and many others I've met with MG, stress really increases symptoms!

One annoyment after another.
Just add it to your list of reasons we have to care for ourselves too.
When people talk to me as they trust doctors as if they were God. I feel like saying...if you want another opinion just ask another doc.
You will for sure get it. I must add my son is a doc....the best thing I hear him say is...I don't know MOm. That is the kind of doc I want.
haha
You are definitely not alone.