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

Attached Files

Prostigmin.pdf (40.0 KB, 1190 views)