What do my test results mean?
 

In May of this year, my ophthalmologist said he was 80% sure I had MG by doing a cold compress test to my drooping eye lid. He ran labs and the result were:
negative on the binding 39% on the acetylcholine Blocking. I took these results to my neurologist and he dismissed these results entirely stating I did not have MG and ran his own tests at the mayo clinic; with the results being: 0.00 on the binding; 7% on the ACh receptor modulating AB; and negative on the striational AB.

However, he still put me on 60 mg of Pyridostgmine 3x's a day. This has significantly helped my drooping eye lid. The neurologist has refused to order any more tests for MG, however, he has ordered expensive testing, including an MRI for MD, testing for lupus,, AMA multiplex (I don't know what this is), a creatinime (I don't know what this is either), testing for rheumatoid arthritis, vitamin B12 deficiency, and Free light chain ratio (don't know what this is).

I've requested a second opinion and am refusing to have all this testing done until I have a second opinion.

What advice do you all have for me?

Hi, Kay. Welcome to the forum!

Do you have an actual copy of all results? These days, they usually only do the binding and modulating antibodies. Blocking is represented within the modulating results (meaning that modulating trumps the blocking results).

If you have 39% blocking, that's fairly significant! Obviously that doctor was not a MG expert or he would've known that.

Antibody tests fluctuate greatly. MG is a clinical diagnosis that is backed up with tests, such as a RNS, EMG, and/or SFEMG.

The fact that you're responding to 60 mg. of Mestinon is significant. Do you have any side effects?

I agree with you about the MRI. Why radiate yourself without a GOOD reason to do so?

What are your symptoms? How long have you had them?

Sensible tests would be vitamin B12 and D, since so many people are deficient. But, if they're abnormal, that doesn't mean you don't have MG!

Do you have symptoms of lupus or arthritis? If so, you should see a rheumatologist, not a neurologist!!! I can't stand when doctors act as though they can thoroughly evaluate another specialty. Any lupus, arthritis, or myositis testing (which is what the creatinine would mainly be for) should be done after a health history and exam by a rheumatologist.

As far as the AMA multiplex (genetic testing), that's not normally done without a high degree of suspicion of a disorder AND after other testing is done. You know, thinking (by the doctor) would be quite useful in your situation BEFORE testing! ;)

http://www.ama-assn.org/ama/pub/phys...nion2139.page?

Have you already had a serum protein electrophoresis test done? The free light chain ratio would just be an adjunct test to that. Does he suspect that you have cancer, amyloidosis, or some other disorder?! Weird.

It would help if you journaled your symptoms in a succinct way.

Have you taken photos of your face before taking Mestinon and then after it kicks in? It takes about a half an hour to kick in. It wears off about 2-1/2 hours after taking it. So, you get about two good hours out of each dose! If you take photos, try to take them in the same place, with the same lighting, head tilt, etc.

Don't make changes without discussing that with a neurologist, though. More isn't necessarily better with Mestinon (too much can cause a cholinergic crisis). Sometimes changing the time between dosing is better.

If you could explain more about what symptoms you're having, that would help.

It might be useful to find a MG expert. They would know the variability of MG and the test results. Fatigable ptosis that responds to Mestinon and Tensilon (the Tensilon test) is the hallmark of MG. It also occurs in LEMS (Lambert-Eaton Myasthenic Syndrome) and some CMSs (genetic version of acetylcholine problems).

How else can we help?

I wouldn't want to be radiated and spend a bunch of money on tests just to rule things out. It seems as though you have clinical signs that would point a smart doctor in the right direction. :cool:

I hope you can find one to help you!

Annie

Thank you for responding. Yes, I have a copy of all the test results. I think the Neurologist's ego is interfering with his objectivity. Since it was the Ophthalmologist who initially diagnosed me (I routinely see the neurologist for migraines and have been in to see the neurologist about 3 times in the last 1 and 1/2 years and he completely missed my droopy eye) I think his ego is hurt and he must now prove the ophthalmologist wrong by finding something else wrong with me besides MG.

I'm frustrated that the neurologist is refusing to run any of the diagnostic tests that you mention (RNS, EMG, and/or SFEMG) and is instead ordering all these other tests to attempt to diagnose some other diseases instead.

My symptoms are classic of MG: droopy eye lid weak arms muscles, weak leg muscles, difficulty chewing. The one symptom I have the neurologist claims does not fit into MG is that my muscles are sore at the end of the day; I feel like I've ran a marathon each day.

I've been reading up on this site for the last week and many people have this symptom, though, because they are pushing their bodies beyond the point that they should and are fatiguing themselves.

I do NOT have any symptoms of lupus, arthritis, or MS. This is why I've sought out a second neurologist; to get a second opinion as I've lost confidence in this neurologist.

It just helps to hear other opinions that I'm not the crazy one; the neurologist is the crazy one.


Thank you, Annie, you helped a lot.

Hi Kay

Welcome to NeuroTalk.

"Free light chain ratio (don't know what this is)"

This refers to the fact that antibodies are made from two kinds of polypeptide chains - heavy and light chains.

Free light chains can, but need not be, diagnostic of conditions like multiple myeloma and primary amyloidosis.

If your free light chain test came back within normal ranges I would not worry about it.

Thank you

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