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Old 05-14-2018, 10:45 AM   #1
azwild
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hi all ,met with dr 3 weeks ago dr suspects mg had mri and blood test blood test results AChR Binding Abs, Serum
11.40HIGH
Reference Range: 0.00-0.24 nmol/L
**Results verified by repeat testing** Negative: 0.00 - 0.24 Borderline: 0.25 - 0.40 Positive: > 0.40

AChR Blocking Abs, Serum
48HIGH
Reference Range: 0-25 %
Negative: 0 - 25 Borderline: 26 - 30 Positive: >30 . Results for this test are for research purposes only by the assay's manufacturer. The performance characteristics of this product have not been established. Results should not be used as a diagnostic procedure without confirmation of the diagnosis by another medically established diagnostic product or procedure.

AChR Modulating Ab
38HIGH
Reference Range: 0-20 %
Negative: <21 Equivocal: 21 - 25 Positive: >25 The assay is linear between values of 12 and 64. Those <12 and >64 are reported as such. No single value for ACR-modulating antibody should be used as a sole basis for meet with neurologist tomorrow is this conclusive for mg thanks dave g
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Old 05-14-2018, 05:26 PM   #2
pingpongman
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I would say yes...but I'm not a Dr...You will know tomorrow...My best advice is read, read, read then read some more...MG can be controlled but not cured...keep posting and you will get great advice here
Mike
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Old 05-14-2018, 05:36 PM   #3
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Hi, Dave. I'm sorry that you feel confused. Did the doctor who ordered the tests talk to you about what the results might mean?

Since all of your Acetylcholine Receptor Antibody tests were positive, chances are high that you do have myasthenia gravis. Do you have symptoms of muscle weakness? Your binding results were off the charts. Your blocking were highly positive as well. The modulating antibodies, when you have high binding, are relevant. Some people with MG (4 - 6%) only have modulating antibodies.

Make sure that you ask a lot of questions tomorrow. You really need to think about the drug options. Mestinon is a helper drug that allows more acetylcholine to get to the muscles. That drug does not address the autoimmune antibody attack that is going on in the neuromuscular junction.

Steroids can cause serious side effects and disease states (steroid-induced diabetes, infections, cancer, and so many other issues such as fluid retention). There are other drugs that are more useful, but can come with risks for cancer (Imuran, Cellcept, etc.). Only you, along with your doctor, can figure out what is best for you. These decisions depend on many things, such as your overall health, any family history of cancer, what age you are, etc.

Do you have any questions we can answer?

You can also go to Home for more information.

I hope you have a good neurologist (a MG expert is better). If you can, bring someone with you to take notes so that you can focus on what to do next. There is a lot to learn about MG.

Just ask if you need more help!

Annie
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Old 05-14-2018, 07:39 PM   #4
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hi, dr started me on generic Mestinon 60 mg 3 x a day at first meeting , i'm male 60 yrs old have other stuff going on also being treated for disseminated coccidioidomycosis (valley fever ) also have leukocytosis , and other stuff thanks dave
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Old 05-16-2018, 08:42 PM   #5
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hi all, confirmed myasthenia gravis neurologist is referring me to barrow neurological phoenix as he said my case is complex , we discussed possible thymus gland involvement ,thanks dave
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Old 05-17-2018, 12:52 PM   #6
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Dave, I'm glad you at least know what is going on. Please make sure that they look at your other conditions, in case other things are going on. Too bad you can't go to Mayo in AZ.

Ask them a lot of questions! Make sure that you research the treatment options before making any decision. They can all have a long-term impact on your health, and you have to consider your other conditions as well.

Have they determined a cause of the leukocytosis?

A neuro will usually run a CT chest scan as well, looking for signs of thymic hyperplasia or a thymic tumor. Some patients can have either of those things.

If you need anything else, just ask. I hope the appointment goes well.

Annie
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Old 05-17-2018, 04:32 PM   #7
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was trying to stay on topic , the leukotosis they feel is cmml and the plan is to watch and wait , mayo would be a great option as it is 1 traffic light away, my insurance is not accepted there ,i had an adrenalectomy for a pheochromocytoma (benign )and mayo was the place to go. had a hard time finding a qualified surgeon for that one , one word i keep hearing is that this and that is so rare, also had viral thyroiditis which was classic for graves disease lost 50 lbs, one of my surgical team from the pheo recognized that it would be temporary went to hypo active and now is normal .i'm diabetic and also have chronic cough been to more specialist than i care to remember , the lung issues i have with the valley fever most of the growths have resolved themselves there is one in the right upper lung and its not calcified will need to be addressed , did some reading and lambert eaton comes up , glad to be going to barrow as i hope ot all gets resolved my referring neuro is setting me up with a specialist thats on the ** website as one of the 4 or 5 specialist for az at barrow
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Old 05-17-2018, 06:28 PM   #8
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It's your post. You can talk about whatever you want to!

There's something called autoimmune polyglandular syndromes.

Polyglandular Autoimmune Syndromes: Immunogenetics and Long-Term Follow-Up | The Journal of Clinical Endocrinology & Metabolism | Oxford Academic

Some people have more than one autoimmune disease, especially those which affect the endocrine system. Many are calling it the neuroendocrine system.

You might be a candidate for IVIG. I doubt that steroids would be good, or immunosuppression (due to CML). I know someone with CML. Diet is very important in those with cancer. At least a no-sugar diet helped that person. I'm sorry you have that cancer. Are they absolutely certain of that?

There are a lot of us here who know what it's like to have more than one disease. Grave's is common among people with MG.

Life can be challenging enough with one issue. I hope you have a good support system. A lot of people aren't comfortable talking about diseases, or how they impact one's life. But we need that support, even if that only involves someone bringing us dinner or sitting and talking about whatever.

I'm sure that Barrow will take great care of you!!!


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Old 05-17-2018, 08:11 PM   #9
azwild
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its not cml but Chronic myelomonocytic leukemia (CMML) is a type of cancer that starts in blood-forming cells of the bone marrow and invades the blood. It affects mainly older adults , i have met with a bone marrow transplant team for possible evaluation for transplant was only given a 22% chance of success my oncologist wants to wait until and if it transforms to aml to start treatment as long as i am stable there is no benefit to treatment , me i just want a pill to fix it learning to let the process unfold , as for the mg i have double vision difficulty swallowing and thankfully it only happened once difficulty drinking fluids as they came out my nose and shortness of breath , i feel good just trying to get used to my new normal for now
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Old 05-17-2018, 08:28 PM   #10
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Thanks for clarifying the CML vs CMML.

I hope you will also see a pulmonologist at Barrow, if they can arrange that. Knowing what your baseline is can be very helpful.

22 percent chance? What if treatment does work?! I really hate cancer. There are countries where that just doesn't exist.

If your MG becomes worse, don't hesitate to go to an ER. An MG crisis can come on quickly. Please be careful out in the hot weather.

No one should have to go through this much. Can any of what we live through really be defined as normal?!

Annie
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