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

From my understanding you would be positive.
Blood work for MG is a funny thing, as you can be negative one year, and then positive the next if you are in a serious crash.
Usually if you have shown up Neg, and you're in a bad flair, the neuro will usually repeat the blood work during that flare to see if it will show up.
Best of Wishes
lizzie

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.,?

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 . 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. Best of luck on your search!

Hi, Call your local MDA, or talk with the MDA that is in the area where you want to go for a doctor. They'll help you find someone who is knowledgable in Myasthenia. A Neuro Muscular Specialist is usually the one to see. My neuro is the Director of the MDA in his City, and he has several MG patients, and in his office, he just hired an MG specialist. Go to a Neuro who has other MG patients. This is so important.
Ask how much experience he has in Myasthenia, if his receptionist sounds unsure etc... then chances are they don't get many MG patients. If you have an MG support group near by, call them, and ask who do most of them see. You can get a hold of the Myasthenia Gravis Association, and ask them as well. Go to their web site, and read as much as you can.
Best of wishes.
Let us know how you're doing.
Love Lizzie

THey are few and far between, but my GP recommended mine.

He is ALWAYS available for me - no matter what. He answers all of my questions - no matter how TRIVIAL they may seem. HE returns my phone calls within 5 min or less, he always visits me in the hosp. - in fact the nurses said they have NEVER seen a dr do that for a patient, he gets me in when I feel weak and makes sure the hosp staff takes care of me - that is what I call one in a million!

Ask your potential neuro how many patients he/she has with MG. Don't EVER let them trivialize your symptoms - ever! Make sure they LISTEN to you and ask you how YOU feel...........write down your symptoms and make he/she reads them...............Do not let them rush you - they work for YOU!

I love my neuro! He is one in a million! I would totally try to date him if I wasn;t already happily married........When I woke fom my surgery he was holding my hand and asking me how I felt..........I am not the only one he treats like that - he treats all of his patients that way - again, one in a million!

Do you trust and respect your GP? He/she should be able to recommmend a great neuro for you!

Good luck!
Erin

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 .

He truly is amazing! I love him!

A lot of "specialists" are really, really hard to work with - their ego is out of this world............that's why I say a prayer every night for my docs - they have all been so kind to me!

Anyone who lives in the Austin/San Antonio area should go see Dr. Ibrahim - 210-949-1913. His staff is friendly and courteous. If you have an appt for 10:00, you are SEEN @ 10:00 - no 4 + hours wait like my dad's neuro.......

How are you today? Are you feeling OK?

Big hugs!
Erin