AChR re-test - has anyone had more than one test?
 

Hi everyone - I hope you are all ok :)

I was just wondering if anyone has had more than one AChR antibody test? I went back to my neurologist for my MRI, Chest X-Ray and blood results - everything was clear but he was annoyed that they had missed my AChR blood test and said it was the most important one. He has finally said he is considering Myasthenia (which is good as I didn't want to be the first to mention it!)

Anyway, back to my question! (Sorry!) I was tested about 4 months into my illness 9 years ago and had a negative AChR result and therefore no diagnosis. Thankfully my symptoms improved 18 months later and reduced to mild symptoms which I was able to adjust my lifestyle to. I am now 2 months into a flare up - one sided facial droop, weak thigh muscles, tired neck and arms and the scariest of all...chest pressure and not feeling able to breathe fully when i try too hard to push through the fatigue.

I am just wondering what the chances are of having a different result this time and wondered if any if you had more than one test and if you had the same or different results? I know there is some talk of antibodies being harder to detect in the first 12 months of illness but I'm not sure how true that is - and if it is the case why isn't everyone re-tested after a year?? Also i know some tests can produce false-negative results but I'm not sure if this applies to the antibody test?

I would be so grateful for any help or feedback - thank you!

It is beneficial to have documented antibodies to facilitate treatment and justification to your insurance company.

They are beginning to use the different antibody test to profile the type of MG. Different antibodies present different clinically and respond differently to the various treatment options. Clinicians are beginning to use it to help predict clinical presentation and responsiveness to different treatments.

I hope this helps.

kathie

I had an AChR antibody test several months after I presented with symptoms of MG. I was retested about 2-3 years later. Both of these tests were negative. However, I know of others who tested negative early on and positive later. It sounds like a good idea to have the testing done again.

Also...having a negative antibody test (whether it's 1 month or 10 years since start of symptoms) does not exclude the diagnosis of MG. Others have been diagnosed with a positive EMG test. I was diagnosed with positive tensilon test and clinical symptoms.

My insurance company readily approved appropriate treatments for my MG, including IVIG, even in the absence of a positive antibody result.

I hope you find some answers soon. If you are not already being evaluated by a neuromuscular specialist that'd be a good idea. A neuro ophthalmologist is also important to see if you are having eye symptoms (double vision, droopy eyelid).

Cate

I've had three AChR-antibody tests (all negative). I was finally diagnosed by a single-fiber EMG (actually, I had three of those, too! The first two were inconclusive).

It's quite common to test negative for the AChR-antibodies at first, and positive later.

There are two other antibody tests you should have: MuSK and LEMS (Lambert Eaton Myasthenic Syndrom). I had one each of those. There are even more antibodies that cause MG-like symptoms, but they're not commonly tested for.

All of this is to say: definitely yes, keep testing!

Abby

My neuro-muscular Dr test me every 6 months. I started neg. then positive for binding now I'm positive for 4 different antibodies 2 1/2 years into this.
Mike

Hi, Unsure81. Welcome! It sounds like your care has been poorly managed in the past. I'm sorry about that. But this new doctor sounds like he knows what he's doing.

First, please do not "push through the fatigue!" If you push MG, it'll just push right back.

What's more important than the antibody tests right now - and what concerns me - is how you describe your breathing! It seems to me that you need to get help right away. The other specialty that works with neurology for an MG patient is pulmonology. Have you ever been assessed by a pulmonologist?

A pulmy can check your O2, do breathing tests and an arterial blood gas if necessary. My pulmy has been invaluable in the past.

If your breathing is so bad that you can't take a breath in or out, can't swallow and/or move well (generalized weakness), you need to get to an ER. Dialing 911 is best. You can't tell how quickly MG will go downhill or how bad it will get. It's a very unpredictable disease.

Antibody tests do change over time, like these guys have said. They do not necessarily reflect severity of MG. There's also the MuSK antibody test and some MGers are seronegative.

Please take it easy! You need to rest as much as you can. And do not stay out in hot weather! It can tank MG quickly.

Don't be shy about going to an ER. It sounds like you are doing pretty badly.

I hope you'll get answers soon.

Annie

I was tested in sept after a severed episode of double vision. It was negative. Double vision did not no away and in jan the dr did test again. That time it was positive. She said it has a high rate of false negative. She also suggested I use a different lab for the second one.

I was tested at diagnosis and tested positive, I was tested again 4 months post Thymectomy and tested negative......but I also felt amazing at that point.

I'm now feel terrible again and would be curious as to what the results would be now. I'm going to push for another test to see where I'm at.