[Tracy9]

I wont' even go into what I had to go through to get there, but my appt was awful.

I thought I was seeing a team of people, but it was one doctor for 30 minutes. Though I have a positive AChR test, not mild to moderate, POSITIVE, all the symptoms, and better on Mestinon, for some reason he doesn't feel "convinced" I have MG because of my long history of Chronic Lyme and maybe some of the symptoms overlap.

He ordered ANOTHER antibody test, this one not even through Athena labs as my neuro did, but just at whatever lab, a CK bloodtest and some thyroid tests, and an EMG!!! Not a single fiber EMG, a regular one!

This seems contrary to everything I've read. I don't feel it is worth it to go back there or have the EMG, I had one two years ago and it was normal.

How do I find a neuro who specializes in MG? I thought the MDA clinic was the way to go. My neuro is moving to CA plus he doesn't specialize in it and only knows the basics. What a huge disappointment. Should I try another MG clinic elsewhere? Will they let me?

[AnnieB3]

Oh, Tracy, I can't even believe it.

It's as if neurologists can't believe a patient can have more than one thing wrong with them. Lyme disease does not cause a positive antibody test! How unscientific is that. He may be sending the antibody test to Johns Hopkins or Mayo. They'll often do that. They certainly don't feel it's necessary to tell a measly patient what they're doing and why.

The other thing neuros do is keep on redoing a test that has been done. They learn this from places like the Mayo Clinic, who believe the way they test for antibodies is the only way. And, at least to me, it's like they are stuck in the "peek-a-boo" phase of doctoring where they only believe something if they SEE it. And if they "control" it.

Regular EMG's are sometimes positive in those with MG, however, why would you want TWO EMG's done when one will suffice?! It's like they are giving those in the EMG field more business so they can get more money. It's certainly not logical. It may be because no one in your area does a SFEMG. Did you ask him why not a SFEMG?

You can always say no to tests. If it were me, I'd wait until the antibody test and the other ones come back and then ask him to be sent for a SFEMG. Say something to him like "I respectfully request to have a SFEMG done instead of an EMG." If he asks why, you can say "If the EMG is negative, I'll have to have the SFEMG anyway and that's two times I have to endure pain instead of one" Geez, do we really have to explain this?

You are in control of this process. It may not seem that way but take back your control then. See what the tests are, get copies and say you will have to get back to him. It's not about what they'll "let" you do. It all depends upon your insurance and if you can go where you want to.

PLEASE don't let stress add to your situation. You are finally gaining a little ground and you don't want to go into a crisis. I know that's easier said than done but have faith that this will all work out. If you were a man, they probably would've increased your IVIG right away and recommended a thymectomy. Sorry, guys, but we women are treated so damn poorly. Not all the time but a lion's share of the time.

Tracy, it's your life, your decisions, your body and your health. YOU are in charge of it. I know you don't feel too "powerful" after the mistreatment you've had, especially in the ER's. It's very obvious that you have MG.

So take a few small deep breaths and relax. Do something fun, like sleep.

You are in a tough situation. You want a solid diagnosis but you also need treatment. You are having IVIG, so it's hard to say what the antibody test will show. You can't go off of treatment to "prove" something that has been proven but you really should have a SFEMG so no other doctor does this questioning crap.

You guys have like, what, 5 feet of snow? I'd say wait until warmer weather but you can't afford to. It would be great if you could go somewhere like Johns Hopkins or somewhere else that has an MG expert. Anyone know of any in her neck of the woods?

Hang in there. I know how tough this is. I honestly believe things will work out okay.


Annie

[jana]

I dunno, Tracy. Maybe I have a different "take" on this. I've been to three different groups of neuros. EACH ran the bloodtests. I did this BEFORE ever joining online groups.

I didn't even question the docs -- held my arm up willingly -- the bloodwork ALWAYS came back POSITIVE. (Three DIFFERENT labs were used, by the way.)

In retrospect.................................maybe the neuros know something that we "hint" about a lot in groups. There are some docs out there that, uhhhhhhh, we probably wouldn't send our worst enemies to. So, maybe all neuros just don't TRUST each others testing protocols or clinical diagnoses???????

Just thinking out loud, here.

[Annie59]

Tracy, I am sending you a hug. As I am sitting here numb from the recent days I can only imagine how awful you feel. I am sorry this is so awful hard. AS I read some of your post (bad reading day) it reminded me of what I am getting in that I know the docs that do the worst job with me are the ones that already decided what I have is being caused by depression-perhaps developed into chronic Fatigue or fibrom. I have learned that they think the mestinon just makes me less 'tired'. The neuro-optho doc literaly put that in the notes as his feeling aobut why I responded positively to the neostigmine injection they did to test eyes. Boy that made me angry.

TAking disorders like depression and lyme and in my case also Sjogrens and saying well it must be that pretty easily and stay in that place to me is the sign of a poor doc. To get treated like a whiner, that it isnt as bad as you say it is is further demoraling.

I feel I still have sjogens tho I first testing positive to the docs tests but then Mayo did a blood test and looked that old biopsy and disagreed. I didnt fight that from Mayo becasue I had found that Sjogrens CAN confuse findings in tests for Myasthenia and MS. It is so blasted wicked to be this sick and get such confusing 'help' or lack there of.

My goal is to get to Kansas City. My experince with the MG people there (foundation) is very positive. I dont have the money now. But I have to have the hope that it will come one day.

Annie59

[Tracy9]

You guys are so awesome!

Annie59, I am so sorry you are struggling so much. I wish there were a way to get you to Kansas City. I wish the MDA had resources like the American Cancer Society, like free places to stay when you are getting treatment, etc. I searched and searched and couldn't find that anywhere.

I am a therapist and I know EXACTLY what you are talking about with the "depression" box. I have had so many clients over the years struggle with that, even get sent to me for "it's all in their head." I never believed in that. I hate when doctors want to just put you into that square box because you have depression; and which came first anyway, the chicken or the egg?

Nothing is harder (I thought) than fighting for treatment and diagnosis of Chronic Lyme. It is highly politicized and doctors get their licenses revoked for treating it, there is legislation going on all over the place about whether it is "real" or not, it's a HUGE mess. Once you are lucky enough to find a doctor and travel to them, it's all out of pocket. I never, ever dreamed a doctor would try to tell me another diagnosis might actually BE Chronic Lyme!

Jana, after I did more research last night, I found out that EMGs are routinely used in diagnosing MG because they try to see if the muscle tires with repeated stimulation. I swore to GOD I would never have that torture test again, but it has been two years I think if not more, could be closer to two and a half, and when I had it I was probably very early MG if at all. So do think I spoke too soon and perhaps I need to keep this appt next week. I'm telling myself if it's too painful, I can always tell them to stop.

AnnieB3, gotta rest hands then want to respond to you.