Question about ACH Blood Test
 

I have a question about ACH readings. In early Aug I was tested and the results came back negative. Then in Early Sep I was tested again, the sample was sent to Mayo and came back high 7.65. Is this a significant reading? Does it really mean anything except I have tested positive for MG? I go see the doctor tomorrow but would like to sorta know what he is going to say in advance. He currently has me on 120mg of Mestinon and 180mg slow release at night but so far it has had no effect on my double vision, droopy eyelid or my tiredness.
Thanks in advance,
Mike

Hi, Mike. Can you say where the first test was sent? I would personally trust the Mayo result since they invented the darn test and have tested more patients than other labs. Was it the binding antibody that came back positive? They normally do binding, modulating and blocking all at once. I had the same situation with Quest Diagnostics, with blood being sent there (negative/borderline) and then to Mayo (positive).

Have they done a chest CT yet? If not, you may want to discuss that. If you start to have more involvement of the rest of your body, especially breathing, you should go back to see your neuro. Now might be a good time to see a pulmonologist to get baseline readings so that you know what your "normal" is just in case your breathing tanks.

I hope the appointment goes well. Write down a bunch of questions to ask. The biggest thing with this disease are the "what ifs." Good luck.

Annie

Annie you are a sweet heart. The nurse didn't say if it was binding, modulating or blocking. Guess I will find out tomorrow. My first blood test was sent to a local lab. As for CT of chest it came back OK. I was really wondering if the 7.65 was an indicator of anything.
Thanks
Mike

Thanks, I try. ;) Well, considering that Mayo's reference range for binding is 0.0 to 0.2, 7.65 is WAY high! That's usually the main test they refer to with MG. Modulating antibodies usually show the severity of disease but not everyone has both of those. I only have the modulating antibodies.

I would have to say that's a big indicator of MG, though I'm not a doctor. I hope the appt. goes well.

Annie

Mike -

My understanding of the antibodies is that if you have them, then you have MG. It's a very specific test, and like Annie said, the range of normal is very low. However, there's really not a correlation that they've found between the level of antibodies and the severity of the disease. As for 7.65 being high...it's higher than the normal range from Mayo, which is .00 - .02. But, a couple of months ago when we sent my blood work to Mayo for testing, my antibodies came back somewhere just over 38. So, as for your question about whether the 7.65 is an indicator of anything, I think all they can say is that it's an indicator that you have MG, but not much more than that.

Jennifer

Thanks Jennifer that is the answer I was looking for. Only 5 hours to my appointment I am really nervous about this. This will be my second visit to this doctor. He is head of ALS Center in Charlotte, NC. After my first visit I felt pretty good about him. My local neuro wouldn't even attempt to treat me.
Mike

Mike, I'm glad Jennifer got to the point better than I did. Patients with ALS may temporarily respond to Mestinon but they don't usually have a high AChR Antibody level.

Even MG patients who are clinically doing okay can have high antibody titers. There's no easy answer with this stupid disease.

Hi Annie your answers were great and a big help. I go to ALS Center because they are supposed to be the local "experts" on MG. I feel very lucky to be dignosed in only 3 months. However the credit goes to my wife. She doesn't accept "maybe" "not sure" for answers. She hauled me to 5 different doctors before we started getting answers. We are still thinking of going to Mayo in Flordia or closer would be Duke but my concern is having to travel back and forth every month or two for treatments.
Hour and half to go before my appt.
Mike

Well my doctors’ visit went fairly well. He said my muscle recovery time had greatly improved due to the Mestinon. He said my eyes had gotten worse, so he told me to continue the Mestinon. He also prescribed Neostignine 5mg once a day for a week then increases it to two a day after one week. He thinks this will help my vision, only time will tell. My next appt is in 4 weeks. My wife doesn’t like him because he is not very informative and you have to pry information from him. The problem is I’m not sure there is another MG “expert” nearby. That’s a decision for another day.
Mike

Mike, I'm glad the appointment went well.

I'm confused about something though. Why Neostigmine, aka Prostigmin? It does the same thing as Mestinon and doesn't last as long. So the chance of it helping your ptosis and double vision (DV) is basically the same as Mestinon.

Usually the only thing that helps some people with DV is Pred or another immunosuppressant. I'm sorry if that upsets you but that's sort of the reality with MG.

You can use gel packs or cold washcloths to improve the eye area, though not too cold.

I would be very wary about taking both of those drugs at the same time. The chance of having an overdose of the drugs will be higher due to that. Too much of Mestinon or Neostigmine and you can have a cholinergic crisis, which is when the drug, not the disease, makes you weaker. Please check with your pharmacist about that! I've attached the PDF on it for you.

I had to point that out. Sorry if that upsets you.

Annie

Thanks Annie for your thoughts. I sorta felt the same way. I think he is trying to "whip a bear with a hickory stick" When I went I was really hoping for Pred. I have already cut back on his Mestinon dose. He had me on 3 60mg a day and a 180mg slow release for over night. The first couple of days on that dose I could barely function so my wife stopped the morning 60mg and I did much better. She felt it was overlaping with the slow release. When she did this she called the nurse and it took 3 days to reply that that was ok. I would really like to find another doctor that will treat me but we are very limited in our area with MG "experts" Heck the drug store had to order both Meds.

No you did not upset me. I am seeking thoughts from those that are experienced in the area of MG. I am so new at this it is scary.

Thank you
Mike

I recently found some "new" (new to me) info on the binding, blocking, and modulating AChR tests. This article http://www.kclj.si/ikn/DEJA/Continuu...htoMGorALS.pdf
(Scroll down to page 33)
says that only a positive binding is a "clearcut" diagnosis of MG (???) and that a positive modulating or blocking (in conjunction with a NEGATIVE binding) must be confirmed by some other test such as (?) EMG or SFEMG.

Not sure if I said this right -- and not sure if I can cut and paste -- so, PLEASE click on the link and read for yourself, OK?????

That's a good article, Jana. ALS is a very scary potential diagnosis, so it's good to know the differences if you are facing down that or MG.

What a couple of MG experts told me, and what I've read, about the modulating only antibody results is that there are very few false positives, especially when done by reputable labs. And when a patient has a classic MG clinical presentation, plus other tests that back up the diagnosis and breathing testing that shows neuromuscular weakness, it's a done deal. They are finding that this antibody issue is far more complex than they thought. It's not some easy algorithm. There are going to be more MG antibodies, I would bet my Mestinon on that. And for people on other drugs like Advair or Flovent that are or contain steroids, antibody tests are not going to be highly accurate. If you have any kind of IgG subclass deficiency, the tests could be falsely negative too.

I know doctors like to be careful but some of them take it to an extreme.

Mike, I like the way your wife thinks! ;) Don't be too eager for Pred, though. I know that DV is a tough symptom but Pred can be much tougher. It affects so many body systems and can wreak havoc on your health, from increased infections, to brittle bones, imbalance of hormones, reduction of the gel coating of the stomach, diabetes and the list goes on and on. If you have any history of cancer in your family, you need to be cautious too. Any immunosuppressant can leave you open for cancer.

Read a LOT. Get as many of your questions answered. If you can afford to, it might be worthwhile to at least travel a little to consult with an MG expert. Neuros have this tendency to dig their feet in once they say something, even if the don't have all the knowledge on a topic like MG.

And I think your wife was spot on about the overlap in drugs from Timespan to Mestinon. Timespan can be useful but some MG experts find it to be too "iffy" in dosing amounts overnight for those who are on higher Mestinon doses or who are more unstable. That's why you need an MG expert neurologist to talk over all of this with.

I hope you will do some more reading, like at www.myasthenia.org and that you can figure out what treatments would be best for you.

Annie

Annie,

it's true that both neostigmine and mestinon are AchE inhibitors, but they do have a somewhat different pharmoacology and mode of action. During my first crisis, the very smart head of ICU that took care of me, gave me IV neostigmine on top of the mestinon, not only to see if I was in a myasthenic vs. cholinergic crisis, but also as he saw the dramatic response I had to it, as an SOS when I started having more severe respiratory symptoms. Thanks to that I was only on the verge of being intubated.

when I was back on the general ward, I had to fight with the neuroloigst (who thought it was not required, and "couldn't" work better then mestinon) to keep on receiving it. The combination of mestinon and injections of neostigmine (which I thought of when I was doing extremely poorly, and pretty much forced my neurologist to recomend) again helped me significantly, a few years later, when my condition significantly deteriorated.

So, I think it is not a bad idea to try this combination as long as it is done with caution and supervision. But, I agree with you that most patients will require some immunomodulating treatment, and there are studies that suggest that it may avoid OMG from becoming generalised.

Alice thanks for your thoughts on this. It does lend me some hope. My doctor has stated my MG is generalized (not sure what that is). All I want to do is be able to see normal again. The part that bothers me is "caution and supervision". My wonderful wife of 50 years watches over me like a "momma bear" but she is not a doctor. She goes in with me to ALL my doctors visits and spends hours on the Internet researching this maddening disease. My doctor or nurse is very slow responding to our calls, which really concerns me.
Thanks again,
Mike

Alice, Thanks, I do know they aren't exactly the same but I was honestly wondering about the reasoning of giving it for double vision. I like when doctors think outside the box but where is the evidence? I was trying to question the logic without overwhelming Mike with all this stuff. No offense, Mike, it's just a lot to take in at first. And it does need to be supervised - I hope Mike has that confidence in his neuro.

Mike, Generalized MG means that it is not isolated to your ocular muscles. I've always thought that to be sort of silly since even those who supposedly have only ocular MG have been found to have positive SFEMG's in other muscle groups.

Get yourself a good pulmonologist. I actually go to my pulmy first when I'm getting worse. Why? The breathing tests are more indicative of how I'm doing than the neuro's clinical exam, which sometimes doesn't happen after they've know you for a while.

If you ever get weaker quickly or even slowly much weaker, over a period of hours or days, you need to go to the ER. If your breathing is bad, for example, you need to dial 911. It's hard to predict how quickly MG will get worse. Don't be stubborn! For anyone who's had it happen, it's quite scary. Do you have a good hospital close to you? Do you know if they are adept at handling an MG crisis? It doesn't hurt to check that out.

We all want to be "normal" again but the chance of that is pretty slim. Not to take away your hope or anything, there's always hope for remission. You may have to change the way you view your life, how you do things, how you adapt to things. If you can do that, you may be able to live more happily along side MG. ;)

Annie

Just got home from visit with Neuro-Ophthamologist and he prescribed a regiment of Pred. He feels I should see an improvement in my vision in 3 days. However he said it’s possible that nothing will happen. I also have to monitor my diabetes very carefully during this period.
Mike