Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Dear Susie, That is just awful! Nobody needs a young blond GP who rolls her eyes... wouldn't she just love to be in our shoes for just one day... I'm fuming after reading your post. Glad you gave her a piece of your mind - and I would suggest that perhaps it is high time you seriously considered finding a doctor who not only knows what it is you have, but will treat you with the respect and dignity you deserve. We all need doctors who work with us as partners in dealing with and treating this disease. We should neither expect nor settle for less. Now that I've got that off my chest, I will just say hang in there kiddo, I'm proud of you for standing up for yourself, and I wish for you only better and less painful days ahead. God Bless, PS: Don't think PA is that rare either, by the way. > > > Hi Everyone, > > I went to my GP yesterday for a checkup to be able to have my total > hip replacement next month. When I was in there I thought I would > get my anger off my chest since she wasn't able to diagnose my PA and > said it was gout two years ago...so I went through months of pain > while my finger I can no longer bend; thank God my husband's > insurance let me get a Rheumy on my own and he couldn't believe how > bad I was...after months it had gone from my fingers to my toes, hip, > spine, jaw. Anyhow she, the GP said the reason she wasn't able to > diagnose PA was because it is rare condition!! She said she had > never seen it and didn't think any GP in her group had seen it!! I > have a hard time believing this-just during my husband's family > reunion this summer two of his relatives had it. I told her my > Rheumy was only in the exam room for less than ten minutes when he > told me what I had...she said it was because he specializes in it so > he would know what to look for. I am still angry at her and it did > feel good getting some of this off my chest. She is right out of > med. school and is a pretty little blonde thing and acts so superior > to me-even one time I " caught " her rolling her eyes at her nurse when > I was telling her about the different areas that hurt...maybe if she > would have listened she would have gotten the diagnosis right. I > just feel that Drs. should be accounted for their actions. Thanks > for listening. > > God Bless, Sue in Michigan. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Dear Susie, I don't think I could have taken the eye rolling thing when I was describing my pain. That is so rude it's unreal. Not to mention extremely unprofessional for a doctor. I know doctors must talk about their patients after we leave with their staff and that's really something that no one can help. But in front of you when you are trying to communicate your pain to her!!!! I would be running to find another doctor. I do think out of all the arthritis types out there, PA isn't the most common. From your descriptions though she should have at least diagnosed you with RA, and then you would have been on a similar treatment plan. My family doctor never did get PA right, but he did at least tell me he knew I had at the very least RA, osteoarthritis, fibromyalgia, and some other type he couldn't figure out. I have no problem when I doctor tells me he doesn't know. I just hate it when they act like they know everything and won't admit that they are lost with my problems. The worst thing a doctor can do in my opinion is not know what is wrong with their patient, and yet still not refer them to another specialist to find out. Lets face it they can't know everything, and some of them are highly specialized. The least they can do is pass us on to someone who can help us. The least she could have done was research your symptoms on the Internet and even then would have come up with PA just from the description you gave in this email. I think she had you lumped into a chronic complainer, if she didn't believe your pain was real, why would she believe your other problems were real either? Boy doctors sure can make me mad at times...lol. I would keep looking for another doctor Susie and I know it's a real pain. I hate doctor shopping. It's the last thing you want to do when you feel bad, but that's when you need a good doctor the most. Well take care and I'm glad you at least told her off on the diagnoses. Love, Fran [ ] Is PA rare? Hi Everyone, I went to my GP yesterday for a checkup to be able to have my total hip replacement next month. When I was in there I thought I would get my anger off my chest since she wasn't able to diagnose my PA and said it was gout two years ago...so I went through months of pain while my finger I can no longer bend; thank God my husband's insurance let me get a Rheumy on my own and he couldn't believe how bad I was...after months it had gone from my fingers to my toes, hip, spine, jaw. Anyhow she, the GP said the reason she wasn't able to diagnose PA was because it is rare condition!! She said she had never seen it and didn't think any GP in her group had seen it!! I have a hard time believing this-just during my husband's family reunion this summer two of his relatives had it. I told her my Rheumy was only in the exam room for less than ten minutes when he told me what I had...she said it was because he specializes in it so he would know what to look for. I am still angry at her and it did feel good getting some of this off my chest. She is right out of med. school and is a pretty little blonde thing and acts so superior to me-even one time I " caught " her rolling her eyes at her nurse when I was telling her about the different areas that hurt...maybe if she would have listened she would have gotten the diagnosis right. I just feel that Drs. should be accounted for their actions. Thanks for listening. God Bless, Sue in Michigan. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 I don't know if you'd consider PA " rare " , but certainly isn't common. Here's some data I included in my journal post ( http://www.livejournal.com/users/astein142/ ) a few weeks ago: " According to the Psoriasis Foundation, Psoriasis affects about 4.5 million people in the U.S., about 3% of the population in general. About 23% of people with psoriasis also have psoriatic arthritis. About 5% of people with psoriatic arthritis have involvement of the spine. " If I'm doing the math right, then that gives us just over 1 million people in the U.S. with (diagnosed) PA, and about 51,750 of them have PA in the spine. It took me 20 years to get a diagnosis, including visits to at least 4 different rheumys, 2 different dermatologies, a neurologist, and countless GPs over that span of time. Since my rheumatoid factor tests were always negative, they didn't seem too concerned about the symptoms and pain. Sorry to hear your GP was an inexperienced whippersnapper. It takes a few years to break in new ones just right. -- ===== -------------------------- Stein www.noblefusion.com/astein If you're tired of fighting battles with yourself If you want to be somebody else Change your mind... -- Sister Hazel __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2004 Report Share Posted November 16, 2004 Hi , mind if I add you to my LJ friends? I'm 'turrelle' at LJ Crystal >From: Stein <darkart42@...> >Reply- > >Subject: Re: [ ] Is PA rare? >Date: Tue, 16 Nov 2004 13:08:30 -0800 (PST) > > >I don't know if you'd consider PA " rare " , but >certainly isn't common. Here's some data I included in >my journal post >( http://www.livejournal.com/users/astein142/ ) >a few weeks ago: > > " According to the Psoriasis Foundation, Psoriasis >affects about 4.5 million people in the U.S., about 3% >of the population in general. About 23% of people with >psoriasis also have psoriatic arthritis. About 5% of >people with psoriatic arthritis have involvement of >the spine. " > >If I'm doing the math right, then that gives us just >over 1 million people in the U.S. with (diagnosed) PA, >and about 51,750 of them have PA in the spine. > >It took me 20 years to get a diagnosis, including >visits to at least 4 different rheumys, 2 different >dermatologies, a neurologist, and countless GPs over >that span of time. Since my rheumatoid factor tests >were always negative, they didn't seem too concerned >about the symptoms and pain. > >Sorry to hear your GP was an inexperienced >whippersnapper. It takes a few years to break in new >ones just right. > >-- > >===== >-------------------------- > Stein >www.noblefusion.com/astein > >If you're tired of fighting battles with yourself >If you want to be somebody else >Change your mind... >-- Sister Hazel > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 --- Hi , Thanks so much for the kind words. My daughter was with me and she said that the Dr. looked like " The Bride of Chucky " - lol,I don't know if you have seen this movie. My daughter made me laugh when she said that. I do get angry every time I think of what I've been through. I told that Dr. that if I could help someone else (hopefully she could be able to diagnose PA after this) that it would be worth what I went through. I don't feel sorry one bit when a Dr. gets sued-they should be accounted for. I will always remember her rolling her eyes at the nurse. She asked me how I was feeling and I didn't tell her about my eyes and that I had an awful sore throat-I'm going to my Rheumy tomorrow so I rather tell him-he is more compassionate. And this is the last time I will go to her-there are other Drs. in her group. Thanks again. God Bless, Sue in Michigan. In , " " <missionblondie@y...> wrote: > > > Dear Susie, > > That is just awful! Nobody needs a young blond GP who rolls her > eyes... wouldn't she just love to be in our shoes for just one > day... I'm fuming after reading your post. Glad you gave her a > piece of your mind - and I would suggest that perhaps it is high > time you seriously considered finding a doctor who not only knows > what it is you have, but will treat you with the respect and dignity > you deserve. We all need doctors who work with us as partners in > dealing with and treating this disease. We should neither expect > nor settle for less. > > Now that I've got that off my chest, I will just say hang in there > kiddo, I'm proud of you for standing up for yourself, and I wish for > you only better and less painful days ahead. > > God Bless, > > > > PS: Don't think PA is that rare either, by the way. > > > > > > > > Hi Everyone, > > > > I went to my GP yesterday for a checkup to be able to have my > total > > hip replacement next month. When I was in there I thought I would > > get my anger off my chest since she wasn't able to diagnose my PA > and > > said it was gout two years ago...so I went through months of pain > > while my finger I can no longer bend; thank God my husband's > > insurance let me get a Rheumy on my own and he couldn't believe > how > > bad I was...after months it had gone from my fingers to my toes, > hip, > > spine, jaw. Anyhow she, the GP said the reason she wasn't able to > > diagnose PA was because it is rare condition!! She said she had > > never seen it and didn't think any GP in her group had seen it!! > I > > have a hard time believing this-just during my husband's family > > reunion this summer two of his relatives had it. I told her my > > Rheumy was only in the exam room for less than ten minutes when he > > told me what I had...she said it was because he specializes in it > so > > he would know what to look for. I am still angry at her and it > did > > feel good getting some of this off my chest. She is right out of > > med. school and is a pretty little blonde thing and acts so > superior > > to me-even one time I " caught " her rolling her eyes at her nurse > when > > I was telling her about the different areas that hurt...maybe if > she > > would have listened she would have gotten the diagnosis right. I > > just feel that Drs. should be accounted for their actions. Thanks > > for listening. > > > > God Bless, Sue in Michigan. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 --- Hi Fran, Thanks so much for your kind message-I second the one that said that your messages are always the ones to look for because of the compassion. I figure if I could help one person not to go through what I went through trying to find out what was wrong with me-I will feel better. Hopefully she will be able diagnose it if she sees if again. I'm to the point that I only trust my Rheumy and my bone Dr. and they both are up in Ann Arbor-about a hour drive (which really isn't bad)-I just hate driving that far. We don't have a Rheumy close by and the other bone Drs. around here aren't really good. I am going to go to a different GP though-there are three other Drs. where this Blonde one is located-she told me to " feel free " to go to someone else. My husband said I should stay with her because she might end up being more careful in my case-but the rolling of the eyes I couldn't take ever again-just knowing that she did it still bothers me. Thanks again and God bless, Sue in Michigan. In , " Fran Mishler " <fran@m...> wrote: > > Dear Susie, I don't think I could have taken the eye rolling thing when I > was describing my pain. That is so rude it's unreal. Not to mention > extremely unprofessional for a doctor. I know doctors must talk about their > patients after we leave with their staff and that's really something that no > one can help. But in front of you when you are trying to communicate your > pain to her!!!! I would be running to find another doctor. > > I do think out of all the arthritis types out there, PA isn't the most > common. From your descriptions though she should have at least diagnosed > you with RA, and then you would have been on a similar treatment plan. My > family doctor never did get PA right, but he did at least tell me he knew I > had at the very least RA, osteoarthritis, fibromyalgia, and some other type > he couldn't figure out. I have no problem when I doctor tells me he doesn't > know. I just hate it when they act like they know everything and won't > admit that they are lost with my problems. The worst thing a doctor can do > in my opinion is not know what is wrong with their patient, and yet still > not refer them to another specialist to find out. Lets face it they can't > know everything, and some of them are highly specialized. The least they > can do is pass us on to someone who can help us. The least she could have > done was research your symptoms on the Internet and even then would have > come up with PA just from the description you gave in this email. I think > she had you lumped into a chronic complainer, if she didn't believe your > pain was real, why would she believe your other problems were real either? > > Boy doctors sure can make me mad at times...lol. I would keep looking for > another doctor Susie and I know it's a real pain. I hate doctor shopping. > It's the last thing you want to do when you feel bad, but that's when you > need a good doctor the most. Well take care and I'm glad you at least told > her off on the diagnoses. Love, Fran > [ ] Is PA rare? > > > > > Hi Everyone, > > I went to my GP yesterday for a checkup to be able to have my total > hip replacement next month. When I was in there I thought I would > get my anger off my chest since she wasn't able to diagnose my PA and > said it was gout two years ago...so I went through months of pain > while my finger I can no longer bend; thank God my husband's > insurance let me get a Rheumy on my own and he couldn't believe how > bad I was...after months it had gone from my fingers to my toes, hip, > spine, jaw. Anyhow she, the GP said the reason she wasn't able to > diagnose PA was because it is rare condition!! She said she had > never seen it and didn't think any GP in her group had seen it!! I > have a hard time believing this-just during my husband's family > reunion this summer two of his relatives had it. I told her my > Rheumy was only in the exam room for less than ten minutes when he > told me what I had...she said it was because he specializes in it so > he would know what to look for. I am still angry at her and it did > feel good getting some of this off my chest. She is right out of > med. school and is a pretty little blonde thing and acts so superior > to me-even one time I " caught " her rolling her eyes at her nurse when > I was telling her about the different areas that hurt...maybe if she > would have listened she would have gotten the diagnosis right. I > just feel that Drs. should be accounted for their actions. Thanks > for listening. > > God Bless, Sue in Michigan. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 In a message dated 11/16/2004 1:03:36 PM Eastern Standard Time, susieesue@... writes: I was telling her about the different areas that hurt...maybe if she would have listened she would have gotten the diagnosis right. I just feel that Drs. should be accounted for their actions. Thanks for listening. Sue, I really feel for you. I have been in the medical profession and a few credits away from my RN degree and believe me I have seen many doctors who should not have gotten their degree. I went through a similar situation like yourself and for years was misdiagnosed. Even ten year ago when I went to a rheumy and told him I thought I had PA, he just shrugged his shoulders. All the signs were there. P, swollen toes, pain in many different joints, etc. All he did was blow me off and tell me to take an anti-inflamatory. It wasn't until 2 years ago when I flared badly that my derm of many years told me he thought I had PA. I then went to a new rheumy and he confirmed it right away. All I can say is listen to yourself and your gut feelings and if the doctor you have is ignorant then it may be time to find a new one. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 what a bummer... i hope you have a beter doctor now, she sounds like an arrogant b with an itch... Tom in Anchorage with slidey streets... > > > > > > > > > Hi Everyone, > > > > > > I went to my GP yesterday for a checkup to be able to have my > > total > > > hip replacement next month. When I was in there I thought I > would > > > get my anger off my chest since she wasn't able to diagnose my PA > > and > > > said it was gout two years ago...so I went through months of pain > > > while my finger I can no longer bend; thank God my husband's > > > insurance let me get a Rheumy on my own and he couldn't believe > > how > > > bad I was...after months it had gone from my fingers to my toes, > > hip, > > > spine, jaw. Anyhow she, the GP said the reason she wasn't able > to > > > diagnose PA was because it is rare condition!! She said she had > > > never seen it and didn't think any GP in her group had seen it!! > > I > > > have a hard time believing this-just during my husband's family > > > reunion this summer two of his relatives had it. I told her my > > > Rheumy was only in the exam room for less than ten minutes when > he > > > told me what I had...she said it was because he specializes in it > > so > > > he would know what to look for. I am still angry at her and it > > did > > > feel good getting some of this off my chest. She is right out of > > > med. school and is a pretty little blonde thing and acts so > > superior > > > to me-even one time I " caught " her rolling her eyes at her nurse > > when > > > I was telling her about the different areas that hurt...maybe if > > she > > > would have listened she would have gotten the diagnosis right. I > > > just feel that Drs. should be accounted for their actions. > Thanks > > > for listening. > > > > > > God Bless, Sue in Michigan. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2004 Report Share Posted November 17, 2004 Dear Sue, I would get rid of that doctor really fast. For one thing, how can you ever fully trust someone if you feel like they are belittling you behind your back? She might be on notice or like your husband said, more careful, but I wouldn't be comfortable with someone I knew felt that way about me deep down inside. I don't have to be best friends with my doctor, but it sure as hell helps...lol. My pain doctor and I joke all the time. We laugh about old movies like Blazing Saddles, or other Mel crazy films. We both love the Sopranos and the Simpson's, and he his addicted to chocolate of all kinds. My husband likes him too and we all get busy laughing and carrying on in the office, that some time we forget what we are even in there for. I know this unusual, because I don't have another doctor I feel that close too. I just know he would help me anytime he could. My family doctor is more reserved, but I know he would never make fun of me. He laughs with me when I try and make him smile, but he is more serious than my other doctor. That sounds like I'm a stand up comedian at the doctor's office, but I know sometimes they get tired of hearing only the bad news. Even so I never had anyone make fun of me that I know of, anyway...lol. I had my hands full at the Cleveland Clinic in Naples, and I'm sure you read my emails about how horrible that experience was. So I don't always do what I say, when I'm in a bad situation. Sometimes we are just caught off guard, and looking back I wonder why I put up with that abuse at the time. You just don't expect it from a professional or someone who is in a " caring field " . I think you have the right idea to travel to the best doctors. I did that for years when we moved from Naples and my rheumatologist was 4 hours away. Luckily, I only had to see him two times a year. He passed away or I'd still be seeing him. Take care Sue and good luck finding a new doctor. Just keep reminding yourself that they are working for you. Love, Fran That's what I do... ----Original Message----- From: susieesue [mailto:susieesue@...] Sent: Wednesday, November 17, 2004 11:08 AM Subject: [ ] Re: Is PA rare? --- Hi Fran, Thanks so much for your kind message-I second the one that said that your messages are always the ones to look for because of the compassion. I figure if I could help one person not to go through what I went through trying to find out what was wrong with me-I will feel better. Hopefully she will be able diagnose it if she sees if again. I'm to the point that I only trust my Rheumy and my bone Dr. and they both are up in Ann Arbor-about a hour drive (which really isn't bad)-I just hate driving that far. We don't have a Rheumy close by and the other bone Drs. around here aren't really good. I am going to go to a different GP though-there are three other Drs. where this Blonde one is located-she told me to " feel free " to go to someone else. My husband said I should stay with her because she might end up being more careful in my case-but the rolling of the eyes I couldn't take ever again-just knowing that she did it still bothers me. Thanks again and God bless, Sue in Michigan. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 --- Hi , Thanks so much for writing back and your very interesting statistics! I really appreciate reading them and was some what surprized. Thanks again for caring. God Bless, Sue in Michigan. In , Stein <darkart42@y...> wrote: > > I don't know if you'd consider PA " rare " , but > certainly isn't common. Here's some data I included in > my journal post > ( http://www.livejournal.com/users/astein142/ ) > a few weeks ago: > > " According to the Psoriasis Foundation, Psoriasis > affects about 4.5 million people in the U.S., about 3% > of the population in general. About 23% of people with > psoriasis also have psoriatic arthritis. About 5% of > people with psoriatic arthritis have involvement of > the spine. " > > If I'm doing the math right, then that gives us just > over 1 million people in the U.S. with (diagnosed) PA, > and about 51,750 of them have PA in the spine. > > It took me 20 years to get a diagnosis, including > visits to at least 4 different rheumys, 2 different > dermatologies, a neurologist, and countless GPs over > that span of time. Since my rheumatoid factor tests > were always negative, they didn't seem too concerned > about the symptoms and pain. > > Sorry to hear your GP was an inexperienced > whippersnapper. It takes a few years to break in new > ones just right. > > -- > > ===== > -------------------------- > Stein > www.noblefusion.com/astein > > If you're tired of fighting battles with yourself > If you want to be somebody else > Change your mind... > -- Sister Hazel > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 --- Hi Tom, Thanks for your message-it was appreciated. God Bless, Sue. In , " tr1rt " <tr1rt@y...> wrote: > > > what a bummer... > i hope you have a beter doctor now, she sounds like an arrogant b with an itch... > Tom in Anchorage with slidey streets... > > > > > > > > > > > > > > Hi Everyone, > > > > > > > > I went to my GP yesterday for a checkup to be able to have my > > > total > > > > hip replacement next month. When I was in there I thought I > > would > > > > get my anger off my chest since she wasn't able to diagnose my PA > > > and > > > > said it was gout two years ago...so I went through months of pain > > > > while my finger I can no longer bend; thank God my husband's > > > > insurance let me get a Rheumy on my own and he couldn't believe > > > how > > > > bad I was...after months it had gone from my fingers to my toes, > > > hip, > > > > spine, jaw. Anyhow she, the GP said the reason she wasn't able > > to > > > > diagnose PA was because it is rare condition!! She said she had > > > > never seen it and didn't think any GP in her group had seen it!! > > > I > > > > have a hard time believing this-just during my husband's family > > > > reunion this summer two of his relatives had it. I told her my > > > > Rheumy was only in the exam room for less than ten minutes when > > he > > > > told me what I had...she said it was because he specializes in it > > > so > > > > he would know what to look for. I am still angry at her and it > > > did > > > > feel good getting some of this off my chest. She is right out of > > > > med. school and is a pretty little blonde thing and acts so > > > superior > > > > to me-even one time I " caught " her rolling her eyes at her nurse > > > when > > > > I was telling her about the different areas that hurt...maybe if > > > she > > > > would have listened she would have gotten the diagnosis right. I > > > > just feel that Drs. should be accounted for their actions. > > Thanks > > > > for listening. > > > > > > > > God Bless, Sue in Michigan. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 --- Hi Fran, Thanks for the message. I can't go back to her, ever. I'm going to go to another Dr. in her " group " that is getting ready to retire and then I'll have to find someone else. You know when I accused her of rolling her eyes she didn't once say that she didn't do it or I misunderstood her (I don't know how that could happen-I guess rolling of the eyes is universal). I feel bad for others that have to go to her because there isn't anyone else to go to. My Dr. that I had for 30 years left the area a few years ago and I haven't been able to find another one like him. He was right out of Med. school and was the nicest person and caring. I'm finding out now that you either get caring or intelligent and not together anymore!! I do like my Rheumy in Ann Arbor-he is very caring. Thanks again and God Bless, Sue. In , " Fran Mishler " <fran@m...> wrote: > > Dear Sue, I would get rid of that doctor really fast. For one thing, how > can you ever fully trust someone if you feel like they are belittling you > behind your back? She might be on notice or like your husband said, more > careful, but I wouldn't be comfortable with someone I knew felt that way > about me deep down inside. I don't have to be best friends with my doctor, > but it sure as hell helps...lol. My pain doctor and I joke all the time. > We laugh about old movies like Blazing Saddles, or other Mel crazy > films. We both love the Sopranos and the Simpson's, and he his addicted to > chocolate of all kinds. My husband likes him too and we all get busy > laughing and carrying on in the office, that some time we forget what we are > even in there for. I know this unusual, because I don't have another doctor > I feel that close too. I just know he would help me anytime he could. > > My family doctor is more reserved, but I know he would never make fun of me. > He laughs with me when I try and make him smile, but he is more serious than > my other doctor. That sounds like I'm a stand up comedian at the doctor's > office, but I know sometimes they get tired of hearing only the bad news. > Even so I never had anyone make fun of me that I know of, anyway...lol. I > had my hands full at the Cleveland Clinic in Naples, and I'm sure you read > my emails about how horrible that experience was. So I don't always do what > I say, when I'm in a bad situation. Sometimes we are just caught off guard, > and looking back I wonder why I put up with that abuse at the time. > > You just don't expect it from a professional or someone who is in a " caring > field " . I think you have the right idea to travel to the best doctors. I > did that for years when we moved from Naples and my rheumatologist was 4 > hours away. Luckily, I only had to see him two times a year. He passed > away or I'd still be seeing him. > > Take care Sue and good luck finding a new doctor. Just keep reminding > yourself that they are working for you. Love, Fran That's what I do... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 --- Hi Janet, Thanks so much for the message. It is so sad that so many of us have to suffer so much until we were diagnosed correctly. Even alittle compassion would have gone a long way with me-like I'm sorry, I'm sorry you suffered, etc. With Drs. responsible for so many lives you'd think that they would more careful and more thorough. Thanks again and God Bless, Sue. In , fam24@a... wrote: > > > In a message dated 11/16/2004 1:03:36 PM Eastern Standard Time, > susieesue@y... writes: > > I was telling her about the different areas that hurt...maybe if she > would have listened she would have gotten the diagnosis right. I > just feel that Drs. should be accounted for their actions. Thanks > for listening. > > > > Sue, > I really feel for you. I have been in the medical profession and a few > credits away from my RN degree and believe me I have seen many doctors who should > not have gotten their degree. I went through a similar situation like > yourself and for years was misdiagnosed. Even ten year ago when I went to a > rheumy and told him I thought I had PA, he just shrugged his shoulders. All the > signs were there. P, swollen toes, pain in many different joints, etc. All > he did was blow me off and tell me to take an anti-inflamatory. It wasn't > until 2 years ago when I flared badly that my derm of many years told me he > thought I had PA. I then went to a new rheumy and he confirmed it right away. > All I can say is listen to yourself and your gut feelings and if the doctor > you have is ignorant then it may be time to find a new one. > Janet > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 I think time will prove the numbers of psoriatic arthritics with spine involvement are greater than that. The problem comes with getting a diagnoses. (it's just hard for me to believe I am 1 in only 50,000 or so people that have this.) I was diagnosed with PA long ago, but one doctor said I couldn't possibly have spine involvement because it was so rare and usually happened to males. X- rays proved otherwise, unfortunately. I've been on MTX 16 years and that helped quite a bit to slow the progress of bone damage. Now I'm on enbrel and MTX and it's a good combination. My neck has shown the biggest improvement though I still have my days. My hands have shown the least improvement and I have no idea why. As far as the psoriasis, I was 45% involved while on MTX alone, and now I fluctuate with between about 2 and 10%, so that is a slice of heaven. I've only been on it since March, and I always get scared it will stop working and I will be like Cinderella at midnight. I do believe it's caused more weight gain for me but mostly from increased appetite which is probably from just feeling well. I keep trying to eat less and exercise more to offset it, so far to no avail. BUT BELIEVE ME, I'M NOT COMPLAINING, I feel so much better. I joined water aerobics at my gym and I don't feel embarrassed because of my skin. I was thinking how wonderful it was to feel like a 'normal' human being without all the awful stares and wondering when they might kick me out of the pool or more likely when I just would not go anymore because of the constant feeling of being a leper and making people scared or disgusted. It's very tiring trying to rise above it. I wish everyone could find something that works for them. Lori > > I don't know if you'd consider PA " rare " , but > certainly isn't common. Here's some data I included in > my journal post > ( http://www.livejournal.com/users/astein142/ ) > a few weeks ago: > > " According to the Psoriasis Foundation, Psoriasis > affects about 4.5 million people in the U.S., about 3% > of the population in general. About 23% of people with > psoriasis also have psoriatic arthritis. About 5% of > people with psoriatic arthritis have involvement of > the spine. " > > If I'm doing the math right, then that gives us just > over 1 million people in the U.S. with (diagnosed) PA, > and about 51,750 of them have PA in the spine. > > It took me 20 years to get a diagnosis, including > visits to at least 4 different rheumys, 2 different > dermatologies, a neurologist, and countless GPs over > that span of time. Since my rheumatoid factor tests > were always negative, they didn't seem too concerned > about the symptoms and pain. > > Sorry to hear your GP was an inexperienced > whippersnapper. It takes a few years to break in new > ones just right. > > -- > > ===== > -------------------------- > Stein > www.noblefusion.com/astein > > If you're tired of fighting battles with yourself > If you want to be somebody else > Change your mind... > -- Sister Hazel > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 You should have waited for the waiting room to be extra crowded and then really let her have it. That is horrible ! My doctor missed my diagnosis for years BUT........she was always extremely sensitive and caring. These doctors are human and they won't always get the diagnosis right. I can CAUTIOUSLY except that. We're the idiots who stay b/c she's " so nice " ...buyer beware I guess. Snippy eye rolling, that's a deal breaker...I'd drop her and her entire practice...making sure that the older doctors are aware of why. > > > Hi Everyone, > > I went to my GP yesterday for a checkup to be able to have my total > hip replacement next month. When I was in there I thought I would > get my anger off my chest since she wasn't able to diagnose my PA and > said it was gout two years ago...so I went through months of pain > while my finger I can no longer bend; thank God my husband's > insurance let me get a Rheumy on my own and he couldn't believe how > bad I was...after months it had gone from my fingers to my toes, hip, > spine, jaw. Anyhow she, the GP said the reason she wasn't able to > diagnose PA was because it is rare condition!! She said she had > never seen it and didn't think any GP in her group had seen it!! I > have a hard time believing this-just during my husband's family > reunion this summer two of his relatives had it. I told her my > Rheumy was only in the exam room for less than ten minutes when he > told me what I had...she said it was because he specializes in it so > he would know what to look for. I am still angry at her and it did > feel good getting some of this off my chest. She is right out of > med. school and is a pretty little blonde thing and acts so superior > to me-even one time I " caught " her rolling her eyes at her nurse when > I was telling her about the different areas that hurt...maybe if she > would have listened she would have gotten the diagnosis right. I > just feel that Drs. should be accounted for their actions. Thanks > for listening. > > God Bless, Sue in Michigan. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Congratulations Lori. That is wonderful news. > > > I think time will prove the numbers of psoriatic arthritics with > spine involvement are greater than that. The problem comes with > getting a diagnoses. (it's just hard for me to believe I am 1 in > only 50,000 or so people that have this.) I was diagnosed with PA > long ago, but one doctor said I couldn't possibly have spine > involvement because it was so rare and usually happened to males. X- > rays proved otherwise, unfortunately. > I've been on MTX 16 years and that helped quite a bit to slow the > progress of bone damage. Now I'm on enbrel and MTX and it's a good > combination. My neck has shown the biggest improvement though I > still have my days. My hands have shown the least improvement and I > have no idea why. As far as the psoriasis, I was 45% involved while > on MTX alone, and now I fluctuate with between about 2 and 10%, so > that is a slice of heaven. I've only been on it since March, and I > always get scared it will stop working and I will be like Cinderella > at midnight. > > I do believe it's caused more weight gain for me but mostly from > increased appetite which is probably from just feeling well. I keep > trying to eat less and exercise more to offset it, so far to no avail. > BUT BELIEVE ME, I'M NOT COMPLAINING, I feel so much better. > > I joined water aerobics at my gym and I don't feel embarrassed > because of my skin. I was thinking how wonderful it was to feel like > a 'normal' human being without all the awful stares and wondering > when they might kick me out of the pool or more likely when I just > would not go anymore because of the constant feeling of being a leper > and making people scared or disgusted. It's very tiring trying to > rise above it. > > I wish everyone could find something that works for them. > > Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 --- Hi, You are so right!! I wish I would have let everyone know in the waiting room...I really feel sorry for anyone that still goes to her. My husband said if I keep changing Drs. that there won't be any left for me to go to...sometimes he can be so insensitive. I put my hands in his face and asked him at the age we are (43)if he would like his hands to look like mine (not to mention other joints that are affected) and if he would like no one to do anything for years and say it is gout-have no pain meds or anything that will help. I left him speechless. Thanks for writing. God Bless, Sue. In , " wodell3320 " <wodell3320@y...> wrote: > > > You should have waited for the waiting room to be extra crowded and > then really let her have it. That is horrible ! My doctor missed > my diagnosis for years BUT........she was always extremely sensitive > and caring. These doctors are human and they won't always get the > diagnosis right. I can CAUTIOUSLY except that. We're the idiots > who stay b/c she's " so nice " ...buyer beware I guess. Snippy eye > rolling, that's a deal breaker...I'd drop her and her entire > practice...making sure that the older doctors are aware of why. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 I have a question about the biologics...I've heard people talk about being on both MTX AND a biologic of some kind to help halt the progression and destruction...I haven't been given a biologic yet, near as I can figure....I'm on MTX, folic acid and Naproxyn. when is this usually done? how soon after diagnosis should a biologic be given? Are they only given in extreme cases? Are they only for special cases? Curious...wondering if I need one or not? Crystal >From: " cornth1313 " <cornth1313@...> >Reply- > >Subject: [ ] Re: Is PA rare? >Date: Fri, 19 Nov 2004 02:24:16 -0000 > > > >I think time will prove the numbers of psoriatic arthritics with >spine involvement are greater than that. The problem comes with >getting a diagnoses. (it's just hard for me to believe I am 1 in >only 50,000 or so people that have this.) I was diagnosed with PA >long ago, but one doctor said I couldn't possibly have spine >involvement because it was so rare and usually happened to males. X- >rays proved otherwise, unfortunately. >I've been on MTX 16 years and that helped quite a bit to slow the >progress of bone damage. Now I'm on enbrel and MTX and it's a good >combination. My neck has shown the biggest improvement though I >still have my days. My hands have shown the least improvement and I >have no idea why. As far as the psoriasis, I was 45% involved while >on MTX alone, and now I fluctuate with between about 2 and 10%, so >that is a slice of heaven. I've only been on it since March, and I >always get scared it will stop working and I will be like Cinderella >at midnight. > >I do believe it's caused more weight gain for me but mostly from >increased appetite which is probably from just feeling well. I keep >trying to eat less and exercise more to offset it, so far to no avail. >BUT BELIEVE ME, I'M NOT COMPLAINING, I feel so much better. > >I joined water aerobics at my gym and I don't feel embarrassed >because of my skin. I was thinking how wonderful it was to feel like >a 'normal' human being without all the awful stares and wondering >when they might kick me out of the pool or more likely when I just >would not go anymore because of the constant feeling of being a leper >and making people scared or disgusted. It's very tiring trying to >rise above it. > >I wish everyone could find something that works for them. > >Lori > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Hi chystal, i'll add my two bits worth on this subject - not because i am totally knowledgeable, but because we're both wonderful canucks and our health care system works differently here in canada than in the states. the biologics are exhorbitantly expensive. how my rheumy explained it to me is that bc med wants us to try all other non-biologic DMARDS (disease modifying anti-rheumatic drugs) and only after all else fails, go onto the biologics. there is a second factor in play here, it might - and i stress the word 'might' - now be an accepted drug for pa but if it is (i just can't quite remember if he told me or not) it is only recently been an added drug for pa. patients with ra do qualify however for at least enbrel - i'm not sure about the others (humira, remicade, etc.). with respect to being on both mtx and a biologic, i think the chance of success is greater. i know for myself my rheumy told me about 6 months ago that if things didn't start helping soon he would say i had ra and try to get me approved for enbrel, and would keep me on mtx and (i think) plaquenil as well. (i have a slightly positive ra factor in my blood so he thinks he can get away with saying this - also said i might actually have ra as well though my diagnosis was pa because of my psoriasis). hope this helps. and i hope others with knowledge about the drugs and the scientific reasoning behind it will also answer. as i said, i put my two bits worth in because both chrystal and i are from vancouver so will be fighting the same red-tape demons when and if the time comes for us to go on the 'big ones'! karen > > I have a question about the biologics...I've heard people talk about being > on both MTX AND a biologic of some kind to help halt the progression and > destruction...I haven't been given a biologic yet, near as I can > figure....I'm on MTX, folic acid and Naproxyn. > > when is this usually done? > how soon after diagnosis should a biologic be given? > Are they only given in extreme cases? > Are they only for special cases? > > Curious...wondering if I need one or not? > > Crystal > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2004 Report Share Posted November 19, 2004 Hi Crystl, Unfortunately, most insurance companies require you to " fail " on all the less expensive treatments before they will pay for any of the biologics. I have just started on Enbrel since I didn't respond well enough to mtx- either oral or injections. My Dr. started me on the mtx injections to satisfy the insurance co and to get me over my fear of injecting myself. I have only been on Enbrel (a biologic) for 2 1/2 weeks. I haven't really seen any benefit yet but I have my fingers crossed. The billed price for a month on Enbrel with my maiil order insurance co pharmacy is $1,222.22. I pay 10% of that sinceit is considered under myb medical rather than prescription plan. I am also still on mxt because the combo is supposed to work best. Tuesday is shot day. Jerre > > I have a question about the biologics...I've heard people talk about being > on both MTX AND a biologic of some kind to help halt the progression and > destruction...I haven't been given a biologic yet, near as I can > figure....I'm on MTX, folic acid and Naproxyn. > > when is this usually done? > how soon after diagnosis should a biologic be given? > Are they only given in extreme cases? > Are they only for special cases? > > Curious...wondering if I need one or not? > > Crystal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Boy, it is amazing how far one falls behind if not on the computer for a couple of days!! And what an interesting weekend we all had... A comment on the biologics that Crystal asked about... I was on Remicade for about 6 months ~ and from the time I started (combined with methotrexate), it kicked right in and took care of the flare for me. I was lucky, I am able to afford the medicine and I told them I wanted the most aggressive treatment possible ~ since they all say, the best way to treat the disease is aggressively. I've said this before, but it is simply ridiculous that the insurance companies can control treatment ~ especially since in the long run, the biologics might be cheaper if they can help some people into remission (and off the drugs)... I have been off all medications (and doing acupunture) since late summer. Of course, these medications do stay in your system for awhile, but by now I figure I am pretty medication free. Knock on wood (cross my fingers, throw salt over my shoulder...) I seem to be doing okay and am in remission for now. Not completely pain free, but managable with an Alieve now and then... Warm Good Wishes, (Idaho) Quote Link to comment Share on other sites More sharing options...
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