To answer some of the questions:
I have had a celiac test [a couple of them] and one came back positive, but the GI doc said he thought it was probably a false positive. Over time, I have just got to the place where I don't eat much at any one time, and I can keep things down or in. I am 6' tall and weigh about 145-150 most of the time, so I'm not extremely sickly.

My neuro did have a peer to peer conference with the insurance company, but they still denied the musk blood test. I will ask him about any other test we might be able to take care of.

Because of the embarrassment of being sick in front of people, [I have had to end meetings early knowing I was going to be sick, and collapsed once during a meeting at church] I have an aversion to eating much when I am going to be out with folks or in church. Being totally exhausted when the 70 and 80 year old men around me are still going strong is also humiliating, especially when they are looking to me to lead them in a project, and sounding like a sick pup when my voice gets extremly week doesn't do much for my preaching. All of this has also added a total dislike of dealing with medical things [I think it is one of those "if you don't think about it, it will go away"] so I hate the idea of any other test.

Of course, God has used this to make me much more sympathetic toward my church members who have suffered with physical or emotional issues. I certainly pray for them more earnestly than I ever did before, and my heart breaks for some of them who really suffer. So everything has a purpose.

I appreciate the concerns, and will see what I can do.
Steve

Steve, Wow, a false positive? Antibodies don't form for no reason. And if you have celiac and are still eating wheat, barley, rye or oats, it's not a matter of how your stomach feels. It's that the antibodies are destroying your small intestines. When that happens, you can't absorb nutrients and you will get sick. The big deficiencies that occur due to destruction of the small intestines are B12, iron, calcium, vitamin K, vitamin D, etc. I had a severe B12 deficiency back in 1997 - 99 (due to achlorhydria/lack of stomach acid). You do NOT want that or the long-term effects of it (neuropathy).

I really understand how you feel about the embarrassment of being sick but I think you'll find that people are not only understanding but want to help. In your role as Pastor, you can actually set a great example of how to deal with disease.

I'm afraid that if you don't think about MG or celiac, it won't go away and may make you very sick or kill you! I know that some people don't want to deal with medical issues. I think a lot of that may be due to fear or embarrassment or huge medical bills! Like any fear, though, it's often easily gotten rid of with a plan, a good doctor and lots of support from others.

Your insurance company is really nutty, no offense. You need those tests done. And the celiac antibodies redone. Most reputable doctors (gastroenterologists who deal with celiac) will not rule out celiac without an upper endoscopy. I've had it done. It's quick and doable. You can't rule out celiac with a negative result though, especially early on in the disease. I have celiac and had positive reticulin antibodies.

I hope you will at least give this some thought. Maybe think about what you would say to a member of your church if they came to you with a similar problem. You need and deserve very good doctoring!!!

Annie

Thanks, it is actually easier for me to be the care giver than the taker. I do much better consoling and counseling the folks in the sick bed than I do being a patient myself. My church is extremely understanding, so it is not a matter of them but of my own mindset. I have tried to be more open with them about what is going on with my health. I'll keep trying.

Steve

Hi Steve,

Did the neuro want to test for MusK before testing for the AchR antibodies (binding, modulating, blocking)? That's unusual and might be why your insurance is confused. Maybe?!? You definitely need to be tested for those antibodies. The best place to use is the Mayo Labs (they have arguably the best mg lab in the country), they'll test for those and if there are some positive results they will reflexively do further tests. Here is the link to the lab information:

http://www.mayomedicallaboratories.c...Overview/83370

And here is the algorithm they use to decide which tests to run:

http://www.mayoreferenceservices.org.../MGADA0709.pdf

And finally, here is the link for the MusK test:

http://www.mayomedicallaboratories.c...Overview/91445

If you send the first link to your neuro (although maybe it's time for a new neuro?) he can call the mayo and they'll send him a kit and instructions for taking a sample. It's easy to do, I know because I had my pediatrician do it for my son.

Also, your neuro should be talking about other neurological tests: the best for mg being a single fiber emg, but short of that (or in addition to) a nerve stimulation test and a regular emg. You also need to be checked for thymoma with a cat scan (don't worry - it's removeable!).

Honestly, your situation is making me nervous. Why hasn't your neuro talked about doing this? Why doesn't your insurance cover diagnostic tests? Geez, that's not insurance, that's just taking your money.

Steve, as you know, celiac and mg are very serious diseases. A lot of us have gone through a lot of doctors before we found one knowledgeable enough to diagnose and treat us. Please, please question and question and verify. Don't be afraid to look for second, third, fourth opinions. It took me six neuros before I found one who knew what he was talking about when it came to mg. If your insurance continues to refuse to diagnose you then don't be afraid to appeal their decision. Really, I went through a period of time when I thought I had gone crazy because it seemed so unbelievable that the docs didn't know what they should have and the insurance was such a pain.

You've made some really good, smart steps into researching this. I can tell you're the kind of person who can ask the right questions. Keep going! Keep asking questions. Keep pushing the docs.

Ally

Welcome Pastor!

I just wanted to offer you a warm welcome to neurotalk!

I know exactly what you mean about becoming more empathetic towards others since your dx! I have become the same way - there are so many scared people out there that just need a big hug and some reassurance....

Hugs and BIG prayers!

Love,
Erin

Steve, the test that a lot of insurance companies don't want to cover is the MuSK antibody test -- and that is because it is only done by one lab in the US -- Athena Diagnostics. One lab means no "haggling" over the price, I guess. The "Myasthenia panel" is done by many different labs -- and usually includes the binding, blocking, and modulating antibody tests. If your neuro is not an MG specialist, he/she may not be aware of this. You need to be prepared to "study up". MG is a rare disorder -- and even among MGers, you appear to have a rare type -- Bulbar.

Hey Steve,

When I was first going through the process of getting a diagnosis in February, my neuro. was pretty sure that it was MG but suspected that I had the MUsk type because my symptoms are pure bulbar- weak tongue, palate, facial muscles (I do have weakness in my hands too, but my doc. isn't sure this is from MG). I would have had to pay for that test because it's not covered by OHIP either here in Canada. I think they said that it was like $80, but I'm not sure. They would have done the testing in England. Luckily, they were doing a study which I became a part of and that covered the testing. It was negative, though. I'm AChR positive.

I know exactly how you feel re. the embarassment. When my symptoms are really bad, it sounds like I'm intoxicated and this had really limited my socializing. When someone would make a joke, it looked like I was grimacing...lol...There are also some pictures I've come across where it looks like I had botox injections...My lips look unusually bloated, and the upper part of my face looks sorta frozen...But things DO get better, believe me! I'm doing much better now, and can talk for a lengthy amount of time before my voice starts to get a bit nasal. Even then, people can't really tell and think that I just have a cold. So don't worry, there's light at the end of the tunnel. I can also make facial expressions without any problems. Wow, a few years ago, I never thought that I would say a phrase like that! lol

After first getting my diagnosis, I was only taking mestinon and was getting plasma exchanges regularly. This would improve things, but only for a short while. After I had my thymectomy (I had a thymoma), my symptoms got pretty bad again, and my doc. decided it was time to try prednisone. I was very nervous about this because I was already a bit prone to infections. Two months later, though, I'm feeling much better in terms of the MG. It has taken quite a few different types of pills (You can check out my profile to see what I'm taking), but I feel pretty confidant that at some point (with time), I will be able to reduce a lot of these and things will settle down in my wayward immune system. Things will get like this for you too! I know that for me, when the weakness is really profound, it's hard for me to imagine that the muscles could ever work again- but they really do- it just takes time, and maybe the right meds. too...

One thing that helps a lot when the voice is bad is to take a really big breath before talking. I was doing this a lot while I was working. When the phone would ring, I'd take a big breath, and my voice would be okay for a bit. Try drinking cold things too (but not too cold). I would also splash my face with really cold water a lot too...That helps...

What the others have said is totally right, though! It's not your fault that you're sick, and you'd be surprised how understanding people are! It's hard when you take a lot of pride in certain things and they become difficult to do because of the illness, but they will come back- they're just on a little vacation...lol...I've been singing for many years, and when my voice is bad, it's impossible to do this...But I still can do it...I just need a bit of a rest after a bit...In time, I feel sure that the rest will come at the end of the song- where it's supposed to be...And for you, it'll be at the end of your sermon.

Pastor Steve,

A great big welcome to you. I hope you get DXed as soon as possible. It took years to DX me but when I was, I was soooo happy to have an answer.

As for being embarrassed, I think we all have and still go through that. I am 46 and get strange looks from people because I don't "look sick"

You said you passed out at one time, I wonder what caused that. MG doesn't make you pass out, at least not that I have ever heard.

You make me thankful for my insurance company. I hope you can get your ins. company to wake up and pay for the needed tests.

Steve,

I had a situation similar to Simon’s. My internist put me on mestinon timespan and made his diagnosis. I followed up with a battery of other tests to confirm.

I had good insurance, and my tests were done through an MDA clinic, where MDA picked up the cost of co-pay.

Jim