Finally a Doctor I Trust—Question About Lab Test

AngelM

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I honestly don’t know how this happened, but I was finally able to see an amazing neurologist, who is not a CFS specialist, but is familiar with CFS research and believes it is relevant to all the conditions he treats. His name is Kevin Webb and he is truly a miracle in this backwash of a state.

Dr. Webb looked at the same test results I took to the fancy Colorado neuro 14 months ago—only to be dismissed and informed not-so-politely that I was wasting her time. Dr. Webb spent two full hours with me, encouraged me tell him everything and anything—even if I didn’t think it was important. He actually listened! He also explained everything to me in scientific detail, didn’t treat me like a moron, and appreciated everything I had researched about CFS and wanted to hear about it.

Long story short (too late) Dr. Webb scheduled additional tests, CT scans, a sleep study, and is hooking me up with a great physical therapist. He also assured me that I could let go of my frustration and anxiety (Wow!) because he would be there for me until we found the right answers—and he then we would continue to work together on treatment options. (Double Wow!)

However, I have a couple of questions for forum members about blood tests. I ask because I find the knowledge available on this forum to be more comprehensive than anything I can find on even the most respected medical websites. I have had two blood tests for striated muscle serum over 14 months, both positive. However all CKs and acetylcholine tests were normal. Dr. Webb said he did not put much credence in striated muscle blood tests when diagnosing Myasthenia Gravis, but looks instead at results of physical examination. He does not think I have MG (I agree) but he pointed out evidence on my MRI that showed that mild pressure on the frontal lobe could be causing my muscle weakness and gait problems. I will have another CT scan next week to rule out thymoma. I do find the blood tests confusing because positive striated muscle serum tests indicate muscle damage, and then yesterday I got the results of a recheck of CK (normal) and the Aldolase test. However, the Aldolase was elevated. (Doc hasn’t seen the test results yet, do I am probably jumping the gun.) I tried to research aldolase on my own and came up with the information that elevated aldolase serum, like positive striated muscle, indicates muscle damage. But information about these tests is rare on the web and I didn’t want to follow some crazy disease trail—so I closed my computer. But I wondered if anyone on the forum with a similar experience might be able to explain why some tests show muscle damage, and the others don’t.
 
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kangaSue

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I would want to have some blood run through Mayo's DYS1 or PAVAL autoimmune panels just as a precaution here.

Positive striated muscle antibody tests are found in 30% of adult patients with Myasthenia Gravis and in 80% of those with thymoma but these antibodies may also be detected in patients with Lambert-Eaton Myasthenic Syndrome and/or as a Paraneoplastic Syndrome where there is a hidden cancer, most typically small-cell lung cancer or breast cancer.

The chances that it's a paraneoplastic syndrome are much less likely to be the case if you have been ill for more than 4 years.
 

AngelM

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I would want to have some blood run through Mayo's DYS1 or PAVAL autoimmune panels just as a precaution here.

Positive striated muscle antibody tests are found in 30% of adult patients with Myasthenia Gravis and in 80% of those with thymoma but these antibodies may also be detected in patients with Lambert-Eaton Myasthenic Syndrome and/or as a Paraneoplastic Syndrome where there is a hidden cancer, most typically small-cell lung cancer or breast cancer.

The chances that it's a paraneoplastic syndrome are much less likely to be the case if you have been ill for more than 4 years.
Thanks for your comments. I am waiting to have my second Chest CT (tech forgot to put contrast in first CT) to rule out thymoma. I realize now that Aldolase test was insufficient, rather than elevated, as I originally thought. I became aware of Lambert-Eaton and Paraneoplastic Syndrome last year, but have been scanned from top to bottom with no apparent abnormalities found. And all but the striated muscle and Aldolase have been normal. This has all been so stressful. I’m beginning to think that the stress, itself, has taken the biggest toll on my health. Seems like “a stupid waiting game.” I’m tired of “waiting.”
 

kangaSue

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I became aware of Lambert-Eaton and Paraneoplastic Syndrome last year, but have been scanned from top to bottom with no apparent abnormalities found.
Not sure what the case is with thymoma's but a developing malignant cancer can be be minute with littlle chance of it being detected in any scan, that is why it's important to run one of the antibody blood panels as a positive finding for one (or more) of these antibodies can be the first sign that you are having an immune response to an antigen.