Originally Posted by zygopetalum

Well I went to see my lung guy yesterday and got 'flamed' a little. I recently finished PT and her report probably stated I'd gotten some relief from neuropathy (and neck pain) from lowering anticholinergic dose. He made a few statements indicating he was insulted I had not discussed the matter with him, etc. I've been TRYING to do that with him and PCP for the past 3 years and no one would listen. Last year when I told him the pain varied with dose and asked him about parestheis listed as a side effect of med he stated it was coincidence. I took a couple of statistics courses, you can't prove it if it doesn't reach significance but you can't disprove it either, and I know from my experience the drug has an effect.

My referral for PT came from the local pain clinic, the PA there initially stated med could exacerbate PN, later denied he'd said it and refused to discuss anything further until I'd consulted Pulmo. I was planning to do that when I developed gastroparesis (which I was able to identify from reading this forum), I knew it would improve if I lowered med dose so I just did it myself because I was so tired of being dismissed. BAD PATIENT!! Yesterday Dr. agreed I had gastro, med lists ileus paralytic as a rarely occurring event and he agreed my lowered dose was ok. I guess if you develop a potentially fatal condition its significant but if your quality of life is destroyed it isn't.

I know they all feel my COPD is a life threatening condition and that treatment of that is first priority. I understand that but quality of life is an issue as well, and I just don't understand why no one has been willing to discuss a conservative compromise in treatment. I don't have a car anymore, took my pedometer yesterday and I ended up walking a total of 2 1/2 miles in 90 degree heat (missed the dumb bus). My PN hurt a little last night but last year I would have been in a LOT of pain. I know many of you would be thrilled to have that much improvement and I sincerely wish you could. There are a lot of COPD patients who would be happy to be able to walk that far as well.

I know my situation may not be typical but this forum has really helped and I appreciate it. Right now I'm going to get busy and go shopping for some easily digested food because I'm beginning to feel a little like I swallowed a rock again, learned that here too.

Sorry for the rant and thanks, have also learned here its not unusual for people in general with PN to have problems finding help.
Zygo