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Questions for Dr. Kennedy
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chronic inflammatory demyelinating polyneuropathy
Posted by: Gaynor
Date: May 16, 2001 8:12 PM

My brother (aged 65) has been in hospital for nearly two years with the disease mentioned. He is being treated with plasma exchange and sometimes with a tablet (steroid?) He is going up to London to Kings College Hospital where he will be seen by, as far as I know, the only specialist on this disease. My brother has not had use of his legs for all the time he has been in hospital. It affects his urinary system and also his bowels (for which he takes fybogel to keep them working). He cannot use his hands to any great extent and has no strength in his arms. Since they cut his plasma exchange therapy from three times a week to twice a week he says his hands have gradually got worse. They have now stopped his plasma exchange altogether and starting him on the tablets again (one a day I believe). My question is: is there any other known treatment that works? He has been to see this Professor in London before where his diagnosis was confirmed. Hel.p.

RE: chronic inflammatory demyelinating polyneuropa
Posted by: Ron Kennedy, M.D.
Date: May 16, 2001 8:39 PM

My knowlege is limited in this condition. The one thing which may work with lower motor neuron disease - to arrest the progress, not to reverse it - is human growth hormone. I have had the opportunity to treat one case of ALS in this fashion and that person's illness has not progressed over the past five years. One case does not a study make, nor does prove anything; but it makes sense that it should work and what else is there?



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