Quick question
 

If the blood test results for Acetylcholine Receptors are normal, is MG conclusively ruled out?

No - you can have mg without positive blood tests. I don't have time to go through all the other tests, etc. that can be run right now. Hopefully, someone else will jump on here and give you all the information or you can search for other threads that discus this in detail.

Good luck!

thanks
 

Thank you, thank you for answering my question.

And I also found http://labtestsonline.org/understand...body/tab/test/ this gem of info.

My first bloodwork was negative. I am now positive for 4 different antobodies. A neuro-opt made my first DX. My experience is Neuro's aren't that great with Dx.
Mike

No. It make a diagnosis more complicated. What are your symptoms? When and how often do they occur?

Other forum members have personal experience with this situation. I am sure they will post soon with some definitive information.

-Mark-

No.

1. You may be positive for MuSK antibodies.
2. You may be positive for LEMS antibodies.
3. You may be positive for antibodies that are known, but for which a standard test doesn't yet exist (LRP4 and others).
4. You may be positive for antibodies that haven't been discovered yet.
5. You may have AChR antibodies that didn't show up on the test (this is quite common, especially early in the disease). Your doctor should test you again in a few months.

If someone tests negative for AChR, MuSK and LEMS antibodies, MG can still be diagnosed. The diagnosis might be:
1. Clinical (based on symptoms)
2. Based on a tensilon test (a shot of a fast-acting drug)
3. (Most common, I think) Based on a SFEMG (single-fiber EMG)
4. Based on the patient's response to Mestinon, which (like Tensilon) inhibits the enzymes that break down acetylcholine, the chemical that the nerves use to communicate with the muscles.

Abby

you guys are responsive - thanks
 

Symptoms initially were drooping eyelids, diffuse eye pain and double vision. More recently serious breathing difficulties.

Have an upcoming appt at Hopkins.

You should call your doctor right away and tell him about the breathing issue. If you define it as "serious breathing difficulties" you should go right to ER. Things can quickly turn for the worse.

Let me guess. The symptoms are more pronounced late in the day and late into the week. Sometime it is OK. These are classic MG symptoms. They were the first ones that I experienced.

Have you noticed any weakens in the jaw when eating? It would feel like your mouth is tired. It is subtle at first, and it is sporadic. Later you ask yourself why is it taking 10 minutes to eat this McDonald's Fish Sandwich? This is the first time I knew something was really wrong, about 3 months before my first MG crises in September 2013.

I asked my first neurologist what they do in the situation of obvious MG symptoms, but a negative blood test. He said it involved complicated test designed to fatigue the muscles.

I responded asking why not just give a few doses of Mestinon, and see if that tamps back the symptoms. He just said something like we do not work that way.

Then I though about Theodoric of York: "the medieval barber gives medical treatments and fine haircuts."

https://screen.yahoo.com/medieval-barber-000000006.html

I was lucky to have a positive blood.

Good luck,

-Mark-

Thanks again to all
 

Panorama your advice is sound. Upon awakening that morning after a typical night of broken periods of sleep, the oximeter read 70%. My breathing was rapid and shallow. I could raise and lower my diaphargm but not much. My diaphargm muscles failed to respond normally. Then it hit me. I took 120 mg of Mestinon (onset 15 minutes) and struggled with my albuterol inhaler. Oximeter read 74%. The telephone handset sat in front of me for a 911 call which I did not make. They could never get here in time. Oximeter readings continued to slowly climb. Remarkably and suddenly the diaphargm began moving. I couldn't believe but I sure felt it. But to be honest with you, it didn't seem like 15 minutes passed. Maybe the onset time is different for everyone.

Now I ALWAYS take Mestinon at bedtime. I have seen both the pulmonologist and the neurologist. And I am looking forward seeing one of the finest MG specialists.

Thanks again everyone.

I assume the 120mg Mestinon is timespan? Are your also taking Mestinon during your waking hours? They also have 180mg Mestinon timespan tablets too.

The MG Manual has a great section on Cholinesterase Inhibitors and goes into detail about the use of Mestinon:

No fixed dosage schedule suits all patients. The need for cholinesterase inhibitors varies from day to day and during the same day. Different muscles respond differently—with any dose, some muscles get stronger, others do not change and still others become weaker. The drug schedule should be titrated to produce an optimal response in muscles causing the greatest isability.

Myasthenia Gravis: A Manual for the Health Care Provider (PDF) - page 17

The PDF manual is free. You can download and print a copy for yourself.

Take care and keep us posted,

-Mark-