Acetylcholine Receptor Antibody
 

Hi folks, I had a call from neuro opthamologist secretary yesterday saying this test carried out a while ago was "mildly positive". He wishes to repeat this test. Had attended for double vision and eye movements poor.

I was of the opinion that a positive test was indicative of MG. Is there any other condition which causes this test to be positive?

My neurologist had a PET scan conducted a couple of years ago which came back positive for something, I was never told?????????? but disregarded as a false positive as it did not fit my symptoms. Funny how they can pick and choose what to accept/disregard.

Interested in any opinion on test.

You are correct. A positive test indicates MG. If I were you, I'd get copies of the lab test and the PET scan.

Thanks ping pong man. Think I would have to wrestle my neurologist to the ground to get PET results. I know they are subtle changes that made him think along the Parkinson's line until 2 negative DaT scans came back.
I can get other result easy enough. What does mildly positive mean.? Does it say on that particular hour of that day my level of antibody was mild and next time could be different or does the level rise slowly with the condition.
Sorry for delay in replying had walked too far this morning and had to sleep for a few hours.
Pushing my luck here but does MG effect sleep patterns and REM.

It just means the results were on the low end of positive at the time of testing. Yes, the results can vary.

In the US, we simply request our films and reports from the facility where they were done. It is our 'right' to have copies of anything. Is the same not true for Ireland?

Good luck!

Red tape but yes even if I had tests carried out by NHS I can request to view or explanation. However my guy HATES to be questioned, he is a really smart man but his bedside manner leaves a bit to be desired. The system here as everyone knows is in a bit of a crises. I suppose if we have a free health service at point of care and emense cutbacks by Government then something has to give.
If you got the money you can be seen virtually anytime.
Sorry about the rant, just frustrated and thanks again.

Hi, Waterwillow. Welcome!

Ditto on what 4-eyes said.

Did you have positive binding or modulating antibodies or both? The modulating can sometimes be positive in LEMS and liver disease, but a false positive in MG is pretty rare.

With your other symptoms, chances are pretty high that it's MG.

You have the legal right to see your medical records! If they don't give them to you, they are essentially breaking the law! Call the clinic manager and tell her that you have the right to see them and want them sent immediately! Your antibody tests, plus the doctor's notes, too!

Some changes in the brain can be indicative of a B12 deficiency. Have you had yours checked?

In MG, we don't get enough acetylcholine—what I call muscle gas—to our muscles because of muscle receptor destruction by antibodies. When the overall muscle supply of acetylcholine is too low, our body literally wants to put us to sleep.

And it's not only how much acetylcholine we have getting to the muscles, but how much we use up and how quickly that affects weakness.

Napping is one of the first signs of MG!

If your chest wall muscles are really weak, then MG can make breathing while sleeping worse. It's possible to have hypoxemia (low oxygen levels) while sleeping. Everyone's muscles get weaker while sleeping, but it's worse for people with MG. Some people with MG also have sleep apnea, which is a separate issue.

The best thing to do is to see a pulmonologist, especially one who is a sleep specialist. They can assess your breathing, including the MIP and MEP tests (they show how well you can breathe air in and out), and know when you are getting worse. That's an aspect of MG that a neurologist can't and shouldn't try to assess and manage!

Since we're in summer and it's hot out, you need to know that when the body is heated up, MG can get exponentially worse! You should stay as coolish as possible! Since you don't have a treatment, yet, you need to take it as easy as you can. Some people who aren't diagnosed or treated yet can get what's called a MG crisis. It's when the muscles get so weak that you need help in an ER—as in dialing 911.

If you can't swallow OR can't breathe well OR can't move well in general (like you're moving in quicksand), then it's time to dial 911. It doesn't matter if you don't have a diagnosis yet. Weakness can become severe and quickly if you're in the middle of an exacerbation (weaker) or a crisis (much weaker). The best place for you is in the ER.

Don't be scared by that, just be prepared in case it might happen!

Antibody activity does NOT necessarily correlate with MG severity. So there it doesn't matter if the antibody level is not skyrocketing! That's a mistake that many regular neurologists, who are not MG experts, can make.

And there's really no such thing as "mild" MG. Why? Because MG is all about becoming weaker with activity. It fluctuates greatly depending upon what you're doing and your overall health or other conditions.

MG is highly unpredictable. A person can do something one day, and then be weaker the next, and even weaker the next day! I call that "two day payback." I don't know why that happens, and it probably doesn't happen in all MGers, but you should watch for any patterns of weakness after you do activities to see what your typical pattern is. But, remember, MG can always surprise you!

Is there anything else that you need to know?

I hope you will seek out the help of a MG expert. If you say where you are, someone here might be able to refer you to one.

You could have more than one thing going on. So maybe check in with an internist, too, to have them check you out.

Good luck!

Annie

Annie thankyou so much for taking the time to explain things to me in terms that I understand.

I have breathing issues at night and have been supplied with a CPAP machine which I have had for some 4 years no, in fact just had it ramped up another bit. My SATS drop and I frequently wake throughout night. If I don't use it I vivid dream, acting them out in some instances. Had a Polysomnograpy on 3 occasions which confirmed REM sleep disorder. Wonder if it is the hypoxia that is causing those?

Because I walk like a drunk man I have been told I have Functional Neurological Disorder, worse when tired.

As I said in my first post have to go to hospital to have some further bloods done but those results will take a while to come back as they need to be sent to a specialist unit in England as far as I know.

Your description fits me perfectly. When asked I cite 2 problems (apart from never ending fatigue)

1. The FREIGHT TRAIN, is how I describe when I can no longer function and MUST sleep. No choice in the matter at all. Totally wiped out.

2. COLLAPSING DREAMS, while dremaing I cannot stand and only crawl. Usually in a scenario where my life is at risk, or grandchildren in danger and I havn't strength to help. Terrifying.

Again to everyone, thanks. Real eye opener as have put up with this for years.:hug:

Well folks I went to get results of my repeated AChR blood test. This came back "WITHIN NORMAL LIMITS".
I was told that this proved that MG was not the correct diagnosis for my condition.
Unfortunately the Doctor I saw was not the one who requested the blood test. So now I am confused. I was told that the initial result was mildly raised, 4. something. Sorry not very up on this type of thing.
I have asked for another appointment in 4 weeks time with the consultant.
Meanwhile I continue to suffer unbelievable fatigue. At times I feel like just stopping all appointments and, what will be will be.

You still need to push to get the actual figures on those ACHr Blood tests. "WITHIN NORMAL LIMITS", is not an acceptable answer.

I have been given the same sort or response. I am still trying to get the results, 3 weeks after the Neuro told me on the phone... "nothing abnormal in the blood tests, so you don't have Myasthenia."

Waterwillow, I don't know what the law is in the UK as far as medical records go, but as JJ said, you need to see the results. Sometimes doctors don't tell us everything.

Didn't they even offer you some Mestinon?

I hope you can see a pulmonologist. You really need thorough breathing tests because your breathing sounds scary. Do you know what your oxygen saturation (O2) is? They should probably do a test to monitor and record your O2 at night while you're sleeping.

People on a CPAP or BiPAP need to be evaluated periodically!

Please try to get your B12 and D checked. And be tested for celiac disease, too. Those conditions are so common. You could have MG AND those issues.

I have a hard time with the way some patients are treated in the UK. It's not thorough or sufficient. And if you have positive MG antibodies, then that doctor could be in legal trouble for not treating you!

I hope you can get the care that you deserve!

:hug:
Annie

Thanks again, I will see the Neuro opthamologist next month and ask for a breakdown but I had a cursory glance (upside down) and only one figure shown. I imagine that other bloods that would be relevant.

I do have my SATS taken fairly regularly and have a portable finger gauge, so I know I sit at around 96% during the day. Night is my scary time dropping well below 90% without cpap. 94-96 with cpap which is ok.

The problem arises should I knock mask off, even partially. Then the crazy dreams etc kick in. I think hypoxia plays at least a part in that and as I had surgery to remove Uvula and take some palate away it is not obstructive sleep apnoea. Somehow my lungs revert to a very shallow breath, obviously not getting the message to pick up and raise O2.

As they would say here, I am ready for the hills.

Fatigue makes us depressed.

Look after yourselves everyone and I will let you know how it goes.

My father had MG and was acetycholine receptor POSITIVE. I spent 14 years being tested, tested, tested and getting all kinds of different diagnoses. My tests for MG came back negative, but my doctors felt it was related to my father's condition.

All the symptoms described fit me. I began having trouble breathing when laying down in 2009. I currently sleep using a ventilator (cpap & bipap failed because my breathing is too shallow). I'm lucky that I can still use a regular mask instead of being trach'd.

Several years ago, Children's Hospital was conducting a research study and my blood was sent. It took over 3 years, but the results came back last year. Most tests were normal BUT a very smart doctor (not my regular one but one of his Fellows) saw that it did show a defective AGRIN gene, which causes a Congenital Myasthenic Syndrome. They said it fits ALL of my symptoms.

DING DING -- we have a winner and I am finally diagnosed.

So just because the standard MG test isn't coming back positive doesn't mean that there isn't some Myasthenic disease at play.

Thanks Madalot. I do think that the medical profession is becoming totally dependant on results, scans etc. It's like the old pilots, they flew by the seat of their pants but they knew exactly how the plane should perform and made instinctive judgements. Now autopilot, computer and technology have removed the instinctive feel.

I will pursue this but as you say yourself it can be an uphill struggle.

Take care.

I spent the first 38 years of my life being a weakling and being teased and tormented because of it. Then it took another 14 years to get a FIRM diagnosis. And if not for the Children's Hospital study (which is done and not available now), I'd still be in the land of the undiagnosed.

My doctors claim that my particular genetic mutation is extremely rare. Regardless, there ARE some treatment options for CMS and my doctors are working on them with me.

Before this, I was diagnosed with Myotubular Myopathy, then Limb-Girdle Muscular Dystrophy, then Mitochondrial Myopathy. But we kept going back to my father's (deceased) FIRM MG diagnosis. It just made sense that it had to have something to do with that, even though I was testing negative.

All I can say is don't give up and keep pressing on, taking advantage of any opportunity for testing. You just never know what they will find.

Madalot, that sounds so like me. teased for being a weakling, no stamina as a child. As a young adult, friends got into distance running, I collapsed after 200 metres. Stress convinced A&E that I was in shock, I was actually delivering a friend who was really hurt.

And now I am being told that as I am seronegative and have no ptosis, then I can't have any Myasthenia. At the last meeting with the Neuro, my partner did ask... "CMS?" "No not possible." says the expert.

Trouble is I am getting worse, and at a worrying rate. So I have no idea where it will end.

I feel for you juliejayne. I truly do. My decline continued at a fairly steady rate for years. I feel so fortunate that my doctors did NOT give up and now that we have confirmed CMS, the treatment options they are giving me are making a positive difference.

I had forgotten what it feels like to feel like doing something. I still need my power chair and use a rollator when walking, but I just FEEL so much better than I did.

I didn't realise that you were wheelchair dependent Madalot. Good for you for keeping at it and tackling life.

I was at a meeting recently to raise awareness of Functional Neurological Disorder (which is part of my present diagnosis). I have an interest in Genealogy and often in searching my family tree I would often look at census from say 1901 1911. In these you will see the Imbecile, Idiot, Dumb or Lunatic. Most suffered from fits from epilepsy, learning difficulty or depression. You were useless if you had no hearing and speech, depressive states could get you locked up indefinitely and given electro convulsive therapy (still used to a lesser degree today).

What was believed then was wrong and I have no doubt whatsoever that todays assumptions will also be found wanting.

My point is you are all right, neurologists, psychiatrists and psychologists DO NOT KNOW IT ALL. Most are I suppose genuinely trying to help but making the patient feel a fool is not the answer.

Every time I have my yearly appointment, I meet with Physical Therapy and Occupational Therapy (my University has a HUGE MD program). In speaking with my Occupational Therapist a few years ago, my walking struggles were becoming too much and the risk of falling too great. She said that as much as she admired my desire to keep walking, it was time to accept that the dangers outweighed the benefit.

I look at my situation like a bank account. Every morning, I get a deposit of strength/energy and I have to budget it to get through the day. Using the power chair to move back and forth through the house (and when we go out obviously) allows me enough strength/energy to get my own lunch, clean up, etc. If I am organized and very, very careful, I can do laundry. But I can only do this because I use the power chair to conserve strength.

And trust me - it's a balancing act to be sure. And I frequently "overdraft" and pay dearly for it.