Re: ally, really discouraged-Ginny

From: Christine M. Smith (
Sat Oct 23 23:05:17 1999

At Sat, 23 Oct 1999, Ginny King wrote: >
>Hi Chris,
>I know how hard it is not to give up. I think we are both suffering
>more from managed care than we are from an inability to communicate. I
>have to tell my pcp each time I see her that I have had a hysterectomy.
>She also always asks how I'm doing managing my IBS, even though she has
>the reports right in front of her that states it's Crohn's. How come
>she can remember the one incorrect diagnosis that was made, but never
>the correct ones. Anyway, my husband thinks I should find another pcp,
>but I'm with you, I have been through several that are worse and I feel
>that this may be as good as it gets under my medical plan. I don't have
>the answers, but know that you have friends that understand. Love Ginny
>At Thu, 21 Oct 1999, Christine M. Smith wrote:
>>Hi Everyone:
>>I really am happy to read the posts from people who are working with
>>cooperative doctors searching to find them relief. It amazes me the
>>number of narcotics some are given which means that some doctors are
>>taking adhesion pain very seriously. It also makes me wonder what I am
>>doing wrong as I continue to have no answers to my problem or to my
>>pain. The first problem seems to be a doctor who doesn't remember (and
>>can't seem to find in his notes)how the last appointment went. At my
>>last visit I was doing pretty good and told him so (and the reason why I
>>thought so). I also told him I was frustrated because I had been to at
>>least 6 different doctors and still had no answers. (he nodded
>>sympathetically, as if to say all those doctor's opinions weren't his
>>idea) I went on to say that the general concensus seems to be that I
>>have sacroiliac inflammation referring pain to the pelvis. Yet no one
>>has documented this inflammation, although several suggestions have been
>>made as to how to do this, and no one cares *why* I have this
>>inflammation. His answer was that just about everyone who comes into
>>his office has at least one problem they don't know the cause of. He
>>feels that I have had adequate workup (more so than anyone else would
>>have done he was sure) and that the crises should be treated as they
>>come up. He gave me an appointment for 6-12 months, adding of course I
>>could call at any time. He doesn't even want me to take the celebrex on
>>a regular basis because he is sure "they" would balk at the expense of
>>using the drug in someone like me.
>>A few visits ago I told him this problem was ruining my life. I might
>>have impressed him at the time because he sent me to the pain clinic,
>>but obviously he has forgotten. When I mention that I'm not in severe
>>pain where I can't function, but its a quality of life issue, he says he
>>understands completely. The pain clinic, while looking promising at the
>>time, turned out to be a big joke, with the doctor giving his
>>recommendations to the pcp who then ignored them. Had I known it was
>>going to work this way I might not have agreed to go, or if I did, made
>>clear my expectations before hand. I just assumed I would be treated by
>>the pain clinic because the pcp didn't know what to do next! With my
>>form of managed care, a specialist can not refer to another specialist
>>but must go through the pcp.
>>What I think is happening is that the pcp doesn't agree with all the
>>other opinions (he actually thinks its the adhesions, but doesn't offer
>>any treatment for them)and he is hoping that in time a crisis will come
>>up that will either prove he is right or provide some more clues.
>>Meanwhile, where does that leave me? I feel like I've been put out to
>>Other than the obvious, and that is to find another pcp, does anyone see
>>any solutions to this exasperating situation? I know I could call them
>>up, give my concerns and complaints to the nurse, and all she is going
>>to say is well, then you'll have to make an appointment and come in to
>>talk to him, and round and round we go again. Finding another pcp
>>scares me though because 1) I basically like the pcp and I've been to
>>enough doctors to know that this isn't always the case and 2) there are
>>no guarantees that I will find anyone who will do anything differently.
>>Yet I look in the phone book and on websites and see what appears to be
>>what I need. Its a gamble and could be an expensive one. Medical care
>>in the U.S. is supposed to be the best in the world. Accessing it is
>>another story. Sure is frustrating and depressing.
>>Chris S.
>Ginny King

Hi Ginny: Thank you so much for the kind words. I really appreciate it. I hope you are feeling better and not as scared. I have been going over and over in my head what I'm going to do. Next week I'm going to call the pcp office and speak to his nurse and tell her that this is not right. Now I'm taking 1,000 mg tylenol along with the celebrex.(which the pcp advised me not to take) It seems to be helping. I don't think its right to keep taking meds like this without knowing what is wrong and why. I might self refer to a local orthopedic group that has several DO's in their spine center. My health plan allows me to self-refer but at reduced benefits. This isn't a problem for office visits but could get expensive for tests/procedures. I will tell the pcp what I am doing and if he won't give me a referral for any recommended tests then I am looking for a new pcp. This is ridiculous.

Chris S.

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