Hi,

That isn't high for me. Not even close. It may depend on the measurements used. My original test (ten years ago) was 247.38 nmol/L. Then just last year in January, I took the test again and got 16.60 nmol/L. My neuro and I were curious with the drop...

They say there is no correlation with the number and severity of disease. but I can tell you I am very stable and borderline remission still on meds. I take Cellcept only and have been on Cellcept only for almost 10 years. I never did any steroids and used plenty of mestinon (and one round of IVIG) in the beginning as I waited for cellcept to work.

This is the criteria used for my testing:

Negative: < or =0.30 nmol/L
Equivocal: 0.31-0.49 nmol/L
Positive: > or =0.50 nmol/L

So even if you were at .50 on my measurements, you would still be considered positive.

Like you I would love to hear what others levels are. I am relatively new to this MG world and not really sure how unwell I really am. I assume these readings are a good indication. To date my neurologist has not shared that info but I am not sure he has done regular AChR tests. it is a confusing world living with generalised MG and have little Neurologist support.

All of my own test results are available to me through the web portal at my medical institution so I can look at them anytime.

My tests were taken when I only had double vision and ptosis symptoms. A month later I was in the hospital for breathing problems.

I had one initial achr test that diagnosed MG and never any more. I asked for one later to "see how I was doing" and my neuro said that the level did not correspond to severity and that my symptoms were how severity was diagnosed.

My results as give to me at Mayo Clinic

MG diagnosed by antibodies;

Thymoma—some tests indicate

AChR Binding Ab(S) May 22, 2012 5.80 nmol/L Normal range: <=0.02

AChR Modulating Ab (S) May 22, 2012 100 % Normal range 0-20% This serological profile suggests thymoma.

Striated Muscle Ab May 22, 2012 Positive 1:120 Normal <1:60 The presence of a skeletal muscle antibody (>/=1:80) in conjunction with a positive acetylcholine receptor site assay is helpful in the confirmatory diagnosis of myasthenia gravis (MG), especially in patients with MG and thymoma. The absence of this antibody argues against the presence of thymoma in patients with MG

GAD65 Ab Assay, S May 22, 2012 0.07 nmol/L Normal <= 0.02 Suggests predisposition to type-1 diabetes and related autoimmune thyrogastric disorders. This serological profile suggests thymoma.

Neuronal (V-G) K+ Channel Ab, S May 22, 2012 0.00 nmol/L <=0.02 Serological evaluation of patients who present with a subacute neurological disorder of undetermined etiology, especially those with known risk factors for cancer.

I am in remission now and again asked for a test to see if I was clear. My neuro said it would surely show up positive even many years into remission, and that it was a waste of time as what mattered were my symptoms -- we already know I have MG and the tests do not show severity.

I did not have a thymoma although the tests indicated I was more likely to have that.

Good Luck
Russ

Hi,
I am under 40, large 250 pound dude. I take 27mg prednisone a day, 2000 cellcept a day for more than 2 years, thymectomy 5 years ago, and mestinon 120 every 3 hours.

By tiered you mean your diaphragm is struggling ?
That is the same issue that I have. The other symptoms are negligible. All muscles get rest except that one.

Over the years I have found ways to better coup with this.
I would be happy to share.

---olaf

Hi Olaf, Chevyman,

When I had trouble breathing during the daytime, I used a CPAP to give me some relief. About 20 minutes sitting in a recliner on the machine and my breathing recovered from when I was having trouble and sort of panicking about it. It got me through some hard times.

For me, high doses (60mg) of prednisone and about 6 Mestinon tablets a day let me function. Eventually, the prednisone alone was enough and I tapered several times and finally tapered down to zero and found MG had gone away and have remained in remission for 7 years now.

My own tiredness was another problem. Taking big doses of prednisone can cause or aggravate osteoporosis, so I had that test and found I had it. To find out if something other than prednisone was causing it, I had more tests and found to have severe primary hypogonadism (testicles not producing testosterone due to some damage -- although I am a father and had a normal life up to my 60s).

So I was started on testosterone gel and that made a great deal of difference in my tiredness, ambition and life. And within 5 months of starting it, I had successfully tapered to zero Mestinon and prednisone with no return of MG. I am still on testosterone and in remission 7 years later.

I asked my neuro if my MG could be a result of the low testosterone, and she thought not, but commented -- well we know that MG is hormone-related as it happens to young women about puberty or so and older men and both of those are times when hormones change.

My endocrinologist also thought not a connection, although said "when a person has very low testosterone, it often shows up in many other body systems."

So, I always suggest that a testosterone test is something useful for men with MG. I don't know if my MG is connected to the testosterone levels, but the replacement to low normal levels gave me ambition, some replacement muscles and rid me of some depression. Quite striking for me. But then my levels were almost non-existent when tested.

Before you warn me about taking testosterone replacement, remember I was at extremely low levels, I am taking just enough to bring it up to the bottom of the normal range. I have done much reading of research articles on this and the health issues of very low testosterone levels in men are vastly worse than replacement to low normal. So I don't worry at all about this and of course have ongoing tests to make sure all else if OK.

Good Luck
Russ