Guest guest Posted May 13, 2004 Report Share Posted May 13, 2004 : Thank you for noticing my comments. The interesting point to that was these doctors are all in the learning process with HNPP. Most have heard of CMT and one knows of HNPP. It's the beginning of a care process for me after dealing with the unknown for nearly 40 years. It's only been 4-1/2 months since diagnosis. I've not chosen the " team leader " from the group of medical professionals as yet. I'm still going through the acknowledgement process by the medical community I deal with. At this point, I'm the " team leader " . And, I like it that way. I have access to a group of doctors and other medical disciplines that I can go to based on a particular medical anomaly keeping them all in the " loop " so to speak. It's to my medical well being that each doctor know what the other doctor is recommending so common ground of treatment/care can be accurately established. As time goes by, the number of doctors will dwindle. I'm sure I will find there will no longer be a need for so many. Please understand there is some discipline duplication from the doctors in the neuro field. Each have made significant contribution to the protocol of care given to me. I will be visiting with the VA physical therapy folks in Portland tomorrow. This will be the first PT visit since diagnosis. Now that I've done my " home work " , I'll be better prepared to discuss with whomever I see there what and what not is appropriate. My main goal tomorrow is to be referred to a PT person here in Salem that has experience with patients experiencing neurological disease and if I'm really lucky, one that has experience with HNPP or CMT at the very least. My previous experience with PT, pre and post surgical, turned out in the long run to have exacerbated the disease process. That will not happen again. For that I'm certain. My last PT regimen resulted in two surgical procedures. And, the PT was for a surgical procedure. Can't win for loosing! I guess the conclusion to all this is that I'm fortunate to have quantity and quality at a time when I most need it. This not a bad thing as it might appear - " ll doctors " - but a good thing. rQn I PS The key for me is to be assertive and involved with my medical care as a partner and not just the patient. Quote Link to comment Share on other sites More sharing options...
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