Blood test results
 

I received my blood tests results today from the opthamologist.,
The Acetylcholine Rec AB

Normal 0.25 - 0.40
My Results: 3.28


ACHR Blocking ABs, Serum
Normal 26 =- 20
My results: 51

The opthamologist wants me naturally to go to a neurologist. But he feels the blood test confirmed his diagnosis of MG. He advised that these are very high.

Yes, they more than likely do confirm MG. I'm glad you know what is going on but I'm sure you are still overwhelmed.

You need to see a neuro anyway. They always like to do the EMG's. ;) It's their "gold standard."

If you don't have a pulmonologist, I hope you get one of those as well. They are an integral part of your "team" when you have MG.

If you have any more questions, please ask them. There's a wealth of information here. Living with MG is hard but you can do it! You probably have to adjust a few things like not overdoing it but it is doable.

I don't know what else to say other than get yourself a VERY GOOD neuro! Take care.

Annie

Hi Whirlwind!
 

Hopefully you will now get the help you need! You will need a GREAT neuro who will actually listen to you - few and far between - sadly!

I bet once you are on your meds you will feel like a new woman!

Big, big hugs!
Erin

How do I find a good neuro??????? What questions should I ask when I am setting up an appointment etc.,?

You're on the way to recovery already!
 

I'm glad you're not having to jump through all the hoops for years before anything shows! Those blood tests are one of the indicators, but of course the neuro will want more to confirm. EMGS most likely.

HMM! Finding a good neuro :Scratch-Head:. That might be the tricky part, but so far I think your luck (I know, having a "disease" doesn't feel lucky, but if ya gotta have it, getting a fast dx is great! ) is running pretty high, so we'll assume that's going to continue. Here are some tips that may help, though.

First, did you ask the Opth if he has someone to refer you to?
Either way, you'll want to do a little homework.

After all the B.S. I've been through with various neuros, I've learned to look at it like this: they work for me, so I want one that has qualities I need -

they have to be able to communicate with me and be willing to explain things to me,

they have to be "available" to answer my questions if I call in - not at that moment and maybe not personally, but their office has to function well enough that I can get an answer without having to wait 2 months for an appointment.

They HAVE to have experience and updated knowlege about Myasthenia.
Something many people just getting exposed to "Neuro world" don't realize is that Neurology encompasses so many different areas that almost all the docs have a subspecialty or area of special interest.

There are vascular neurologist that deal mostly with migraines and such that aren't keeping up with developements on something rare like MG.

You need to, at the least, find someone who's special interests lie in the neuromuscular or autoimmune fields. It's unusual to find one that actually lists MG as a specialty, but you do want someone who is currently treating other MG patients.

And of course, if your insurance requires you to see someone on their list.

So my questions would be: (after I narrow down options based on ins.)
1 - how far out are you for appointments?
2 - are you currently treating other MG patients - many?
3 - If I have questions or concerns, can I call in and get answers?
You'll have to determine their communication style on your first consult.

This really isn't sexist, but seems like it. My best experiences have been with the female docs. They seem better able to really listen and don't seem to jump to the old "depression" explanation first.

There is a website where you can look for docs in your area by location, specialty, subspecialty, and other criteria. You can see how their school rated, the hospital(s) they are affiliated with and the ratings for them.

Go to vitals.com and do a search. If you need some more help with this, let me know. I can do the search for you if you'd like. I just need to know some info from you to be able to do it.

One last thing, just in case they want to do an EMG on that first visit (highly unlikely) - make sure you don't smoke for 24 hrs., have caffein for 3 hrs, and don't eat potatoes or peppers right before. These things may interfere with your EMG results. The neuros don't understand this yet, but Annie dug up the info and Mrsd added to it, and I have experience that proves it.

Let me know if I can help you in anyway. :hug: Best of luck on your search! :grouphug:

GREAT neuros
 

Wow!
 

Erin,
You do have a GREAT ONE! I was thinking maybe he has a little crush on you until you mentioned he treats all his patients that way!

Tell him I think he should travel the country putting on clinics for how a doctor should act with his patients. If we could clone him, I'm sure a lot of us would be in much better shape cuz we wouldn't have near as much stress in our lives :D.

YEP - he is AMAZING!