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In Memorium
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I know we've talked about this before - and that most people are really aginst it exept for severe cases where certain conditions are being looked for (that was my case)... I had one five years ago - it wasnt done by a neurolgost but a surgeon who for some reason took it out my the back of my calf - and while it showed severe neruopathy and shows exactly the type of damage ("severe peripheral neruopathy w/disporportionate involvement of large mylinated fibers; evidence of both axonal degerneration and segmental demylination - goes on for four pages...) - my doc at the time, based on combination of physial disabilty and autonomic symtoms, and biopsy results, just told me I needed to move into assisted living (I refused - I was all of 45).... I've seen two good nerolgoists over the past 5 years - one did more testing but never found underlying cause - but my current nuero, who I just saw yesterday - has asked for this test speifially beause he was about to order one himself but of ourse I have copies and already faxed back to him.....
My PN is getting worse - as is the autonomic PN - which not only affecting my guts but my heart (I'm getting cardiomopathy and already have rythm problems causing tachycardia runs that I have to continously take meds to control) - and he's truly I think intriqued and really concerned... I'm going to have another NCS/EMG in two weeks - and he's going to go over my whole history again..... I was having IVIG last year but its on hold - they have been doing amyloidosis testing but tell me "you have all the symtoms but we cant find it "right" now... the IVIG seemed to hep me - I'm getting much more achy, tingly, and weak without it - but the other problem right now is my gut - I can get thru a whole infusion without the nausea becoming too overwhelming and its too expensive to waste a treatment..... I'm really hoping that the biopsy may give him some clues, and also very curious as to any changes in the NCS/EMG (each one has shown progerssion of disease - which hit in '99) - so that the doc might be able to order any tests missed, etc..... Maybe I'll be one case where the biopsy really will give them true clues! |
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