Jane77
37 post s
22-Jul-2008
7:18 PM
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The results of my MuSK test are back and they show a small amount of Antibodies but within the normal range. My Neurologist says this means I do not have Myasthenia. I take low dose Cortisone for another reason - could this influence this test ? Should I seek another opinion ?
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Hammer
8 post s
23-Jul-2008
6:28 AM
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I'm no expert on this, but I have come to understand that the tests can only confirm MG. There is no test that will conclusively rule out MG.
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scottyd
15 post s
23-Jul-2008
8:04 AM
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Hi My understanding of the literature on MG is the same as Hammer's. Something like only 80% test positive for ACH antibodies and of the remainder only a proportion are positive for MuSK antibodoes. Also there maybe be a genetic link to the MuSK results - apparently much higher occurance in people of a mediterrean background and largely unheard of in Scandanavian ancestry - or so I'm told. I was ACH neg - still waiting for results of MuSK - but Neuro in no doubt its MG because of other symptoms. Diagnosis can be tricky and you may need to be very patient while they test you. Good Luck Derek
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chairman
MGA Chairman
795 post s
23-Jul-2008
10:56 AM
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Having no detectable antibodies does NOT prove you have not got MG. Around 5-7% of myasthenics have antibodies which cannot be detected with any existing test. If you are already on steroids it could affect the test result.
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 Peter Finney
MGA Chairman
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SharonT
21 post s
23-Jul-2008
4:19 PM
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Chairman: Could you please direct me to some information on steroids influencing these tests? Thanks
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chairman
MGA Chairman
796 post s
23-Jul-2008
5:03 PM
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Sharon My remark was based on conversations I have had with neurologists. The point is - the antibody tests are done normally before immuno-suppression is started. It is not hard to deduce that if you are taking steroids or other immuno-suppresssive drugs - the antibody levels should be reduced. After all that is why you are taking the drugs in the first case. On the other hand strange things can happen. My daughter had been taking prednisolone and azathioprine for well over ten years. She was symptom free, and had never had a positive antibody test despite lots of attempts - including testing for Musk - then her neurologist decided he would do another test and the antibodies were detected. Work that one out - I can't! It is possible that the testing was better. No one ever doubted that she had MG. If you are concerned about this issue - discuss it with your neurologist and ask for his reasoning, but be prepared for strange answers. Despite what you may be told -no single test can give a definitive diagnosis of MG (or rule it out) - it is the totality of all the symptoms and tests which gives the answers - and you need an experienced and determined neurologist to get it right. This is why MGA is working hard to get more specialist centres for treating and diagnosing MG.
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Peter Finney
MGA Chairman
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SharonT
22 post s
24-Jul-2008
6:58 AM
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Thank you Chairman for your reply. I have asked 2 neurologists and they both said the test would not be affected but I will have to ask why. Yes I wish there were more specialty centers to go to especially in northwest Florida where I live. My neurologist says he specializes in neuro-muscular diseases but he is very young and inexperienced in MG.
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Hammer
10 post s
24-Jul-2008
9:29 AM
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Sharon
It does seem improbable that Cortisone would not impact any test that would meassure anti-body levels. It would be interesting to note their reasoning for dismissing the effects of Cortisone on the test, so we can learn from their experience. I'm in Michigan and am going through the very same ups and downs regarding a firm diagnosis of my problem. MG symptoms seem to be very unique, so clinical observations sometimes trump lab tests, especially since no test can rule out MG. I've had diplopia for nearly 14 months now and all the docs have ruled out MG, for reasons that baffle me.
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Jane77
38 post s
24-Jul-2008
9:07 PM
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Thankyou Mr Chairman, Your feelings on this subject have been helpful. My MuSK test was sent to Australia's only MG Clinic but in hindsight they should have been informed of my cortisone use before they made their summary. Hindsight is 20/20 as they say. It was also interesting to read of your daughter's eventual positive test after so many years. Her Neurologist must have diagnosed her without a positive blood test but I and many others are excluded from a diagnosis for this reason. It appears that there is a wide range of understanding in the diagnosis of MG around the world. Derek, I am interested to know more about the genetic link re MuSK. My Auntie had MG and I have been told that this only carries a slight increased risk factor to me. She died in 1990 and was never tested for MuSK.
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scottyd
17 post s
24-Jul-2008
9:32 PM
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Only genetics I have heard about is 1. if someone in your family has a history of autoimmune illnesses you are more predisposed to MG, not just specifically MG. This includes apparently diabetes etc. eg there is no history of MG in my family but both parents had diabetes and I have a cousin with MS. does this therefore make me more likely to contract MG? 2. Some not yet proved indicators that MuSK is a much more prevalent tendency in mediterrean ancestry than in northern European. I have French ancestry so neuro researcher waiting for result of MuSK test Big thing is we just don't know what genetic tags are relevant to MG which is why the research sponsored by the association is so important Not a lot of help I'm afraid but good luck Derek
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chairman
MGA Chairman
801 post s
24-Jul-2008
10:43 PM
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scottyd The predisposition to Auto-immune disease is strongly influenced by tissue-type and is an inherited factor. This is quite well understood and the genetic basis is established. How these factors work in each case and in each disease is less understood. Research continues into this - and how to use the information for diagnosis and treatment.
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Peter Finney
MGA Chairman
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