Antibody tests question
 

Hi-
My Dr ordered MG panel on me about a week ago and I just saw the results:

Acetylcholine Rec Binding- Negative
Acetylcholine Rec Block Ab- Negative
Acetylcholine Rec Mod Ab- 85% (H)- says normal is <32%
Striated Muscle- Negative

I'm waiting for the Dr. to call me back (I saw results before she did), but it seems like from I've read, if any of the Acethylcholine Antibodies are positive, this is diagnositic of MG (especially if you have symptoms). Is this correct?

Any thoughts are appreciated! I haven't had any other NM testing done- I'm guessing that's next.

Barb

Hi, Barb. Glad you finally got the results.

About 7% of MGers are "modulating only." I'm one of them, too.

I don't mean to alarm you, but a modulating result that high should prompt your neurologist to immediately order a chest CT scan to look for a thymoma, cancer of the thymus gland.

In some cases, a removal of the gland can cause remission. Although, that usually doesn't happen. But you do need to know if you have cancer or not or if the numbers are high only because you don't have treatment yet.

I really hope your doctors will help you right away now. And, yes, it would be unlikely that you don't have MG with such a high result. Welcome to the club, I guess. ;) They will probably want to do a SFEMG or other such test, too (finally!).

Annie

Thanks Annie- one more question
 

Thank you. I do have one more kinda specific question that I don't know if anyone will know the answer to. When I saw the Dr the day before I had my labs drawn, I was having some "unconscious" muscle tightening. Different from a spasm because I could force my leg muscles to relax but then the isovolumetric contraction would build again. She prescribed me 800 mg skelaxin to take to see if it would help. I took one pill about 14 hours before my testing. Do you think that would cause the modulating antibody to be elevated?

I haven't taken any since I started taking the possibility of having MG seriously since I'm guessing a muscle relaxant isn't a good thing for a muscle weakness disease :)

Thanks again for your help. Dr. still hasn't called me back. I'm not sure if it's because she doesn't have the results or because she's not sure what they mean- she admitted that she has only seen 2 patients with MG in her 15 years of practice when she ordered the labs so I'm pretty impressed that she even thought of MG and ordered them.

Barb

http://www.mayomedicallaboratories.c...nit_code=83370

I rather doubt that was a "false positive" you had!

It would probably be a good idea to consult with an MG expert. And they would probably redo the antibody tests (experts are odd that way, as if no one else's lab is as good). Do you know what lab ran the tests?

Even if you don't have an MG expert on a long-term basis, it's good to at least have a conversation about all of the possible variables of the disease.

In between doses of Mestinon, when I'm sleeping, I can have such bad calf cramps. It doesn't happen a lot and it all depends upon what I did the previous day. So it could be happening because you aren't being treated yet and your muscles are really weak. Or you could have an electrolyte imbalance (i.e., potassium). Do you drink enough water?

If they don't call you, give them a call! ;)

Annie

Barb

I just went through my old lab reports - my modulating was elevated-38 and my blocking was extremely elevated - 745. I did have a CT scan that showed thymic hyperplasia (enlarged) and had a trans sternal thymectomy 7 weeks later. No thymoma but the thymus was softball sized. Thankfully, blessedly, I have been symptom and medication free since 2 weeks after the surgery. (3 years ago)
Don't forget that MG is known as the "snowflake disease" as everyone presents signs and symptoms differently - which includes lab results.

Lisa

Wonderful support
 

Hi Annie and Lisa-
Thank you for replying. It's weird- I thought I would be happy knowing what is wrong with me. In a way it makes me feel better to know that I'm not crazy or depressed.

I guess next steps are to find a MG specialist and get more testing to confirm diagnosis. Did you guys tell your family about the possibility of diagnosis before it was final? I'm struggling with when to tell my husband of the test result- tonight or after I have more testing done and it's confirmed (or denied).

And just to complicate things- I have a test tomorrow and Friday! Here's hoping I can put my intense research on all things MG on hold until Friday afternoon!

Thanks again for your support and any suggestions you can give on when to tell loved ones and what may be coming next.

Barb

Absolutely tell him tonight. I would be crushed if the tides were turned and my husband didn't tell me.

I agree, my wife goes to all my appts so she can help me understand this crazy disease. Plus 4 ears are better than 2.
Mike