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My Neurologist has just orded some blood tests which I think have gone to America. They are anti-GD1a; GD1b and GQ1b. He says that the condition could possibly be Canomad! My paraproteins are now normal again, and hypercalcemia levels are good. This after two years of IV Pamidronate, and a course of Intergran etc.

What is the prognosis for this disorder, and is there someone who has this condition who can tell me what to expect?
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Avatar universal
Hello cilycoed,

This is a rare syndrome characterized by a range of abnormalities caused by immune-mediated nerve demyelination. There is usually no loss of limb function associated with the disorder. The face, throat, mouth and eye symptoms (weakness of the muscles) usually come and go.
The list of treatments mentioned in various sources for CANOMAD syndrome includes the following list. Always seek professional medical advice about any treatment or change in treatment plans.
The following may provide temporary relief in some cases: plasma exchange
Intravenous immunoglobulin
Cytotoxic drugs
Refer: http://www.wrongdiagnosis.com/c/canomad_syndrome/treatments.htm
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Avatar universal
Thank you for your posting. I guess this will explain the dry eyes and mouth, the way my voice has changed too. Maybe the itchy face as well. What sort of prognosis is there for syndrome?

Is Intravenous immunoglobulin the same as Intergran or is it Intergram? I am taking Amitryptaline at present [sorry for the incorrect spelling] It's for the neuropathy I think. Also Razene for the itch.
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848718 tn?1257138801
Hi there!

I'm wondering what your test results ended up showing? I just got test results that show me as positive on the GD1a and GD1b. My CQ1b and GM1 were normal.

My hematologist was the one who ran the tests, because I also have MGUS that he's monitoring me for. I already had an appt next week scheduled with the neurologist to be checked for MS, but now I'm wondering what the heck these test results could mean.

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