Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 In a message dated 7/2/2004 8:32:43 AM Eastern Standard Time, dosgatos22002@... writes: I'm 26 and have had P for 7 years. What do you think I should consider? The rheum. said he is not going to try anything other than NSAIDS for quite a while because I am so young. I'm worried more damage is occuring and I would like to stop it sooner rather than later. Thanks for your thoughts, Hello, Yes, you are young but you are also the only one who can say how much pain you are in. If your pains keep progressing then you can have further damage if nothing is helping you. I believe I had PA since my 20's and I am now 50. Most doctors blew me off including a rheumy around here that was supposed to be good. I only got diagnosed about a year ago when symptoms became severe. Listen to your body and if you are not happy with the doctor then see if you can go to one who will listen. Where do you live? Janet [Editor's Note: I'm 54, and have had PS and AS since 17....I ABSOLUTELY AGREE with Janet: You MUST take charge of your care. Listen to the docs; let them be your Congress (advise and consent role), but YOU be the President (the executive decision-maker). If you don't like the direction a doc is leading, fire her/him and get another. If you're being unwise or unrealistic, odds are strong no doc (worth anything) will agree. Good, confident (read competent) docs want you to be educated about your disease, and involved in your treatment; insecure (and that means shaky skills) doctors want you dumb and acquiescent. Seven years of medical-related education (B.S., M.S, Counseling Psychology & Psychopharmacology), a career in medical-related fields, and 37 years education as a Rheumatological & Internal Medicine services consumer, have all taught me the above (O yeah: and this advice from a 30-year RN: " Don't fall asleep in the hospital... " ;-); anyone with a like background--and the brains God Gave a Gopher--will tell you the same damn thing. Okay, then, from form to substance: As Janet observed, and pain (intensity) is a fairly reasonable guide to some-to-most likely damage-producing events & conditions extant within you (although: do not rely on pain alone as a guide to damage production, for any more than a couple of months!). So make your judgement whether palliatives (read: symptom-reducing meds that do not touch underlying disease processes, and therefore allow damage to continue) also known as NSAIDs, which I just don't like in general; the risk/benefit profile is poor in my view: remarkably little pain relief, some inflammation reduction; at the risk of GI problems, and more. Aspirin is just as effective. If you can't take aspirin, then maybe. But if you're in more than nuisance pain, you need a centrally-acting analgesic. SO: If you are concerned about damage--I was 30 before taking a DMARD (disease-modifier), methotrexate, and I'm paying for that now, in pain, limitation, and as I am now applying for SS Disability--get on about fighting the disease, not the symptoms. D. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2004 Report Share Posted July 2, 2004 First of all. not all RDs are created equal. If you are not getting positive results, get a second opinion preferably from a younger person with experience in modern biologic drugs. I had similar problems with my hands. Enbrel has reversed the disease but I have permanent joint damage caused by the disease before starting Enbrel. I had 9 joints affected. All resolved eventually but 3. Unless you want these crooked fingers for the rest of your life I would suggest you find an RD that will treat you more aggressively with a biologic drug. This disease is a real drag and you have to be your own advocate. I demanded to try Enbrel before it was even approved for PA. Without it I would be a cripple and probably not be here the way my PA was progressing. Sometimes PA is cyclic and Enbrel can get you through a flare lasting months or years. If your immune system normalizes, you may then be able to reduce or eliminate it. I now only take one injection per week and the occasional Viox compared to the pharmacopia of poisons I had to endure before starting Enbrel. R.E. [ ] new here > Hello everyone, > I was diagnosed with PA in December of '03. I had some > questions on meds. I have been on Vioxx, Celebrex, Mobic, Bextra, > Sulfasalazine and 2 medrol packs. So far (unfortunately) the only > thing that has made the biggest difference was the medrol pack. I > know you can't stay on steoids for that long so this is really not > an option. > Anyway, now I am on Voltaren. Initially the pain was in my > shoulders, knees, and thumb joints. Eventually it progessed to my > hands and now my feet. Since I have been on the Voltaren my > shoulders and knees do feel better but my hands and feet do not. I > go to the rheum. next week. When he asks if the Voltaren is working > I don't know what to say? Sounds stupid I know, but so far my > experience with rheumatologists is not positive. As soon as I say > something might be working, and my pain is less, they consider the > pain issue solved. > About 3 months ago, two of my fingers on my right hands began > to swell in the joint and now they are crooked. It happened quick > and they haven't straightened out yet. They are really painful > too. My left foot has begun throbbing in the ball of the foot > area. It feels like someone is poking with me with a hot poker some > days. > I'm 26 and have had P for 7 years. What do you think I should > consider? The rheum. said he is not going to try anything other > than NSAIDS for quite a while because I am so young. I'm worried > more damage is occuring and I would like to stop it sooner rather > than later. > Thanks for your thoughts, > C > > > > > > Please visit our Psoriatic Arthritis Group's informational web page at: > http://www.wpunj.edu/pa/ -- created and edited by list member aka(raharris@...). > > Also,in August 2001,list member Jack aka Cornishpro@... began to conduct extensive research which he publishes as the " Psoriatic Arthritis Research Newsletter " , monthly in our email and digest format. Many thanks to Jack. Back issues of the newsletter are stored on our PA webpage as well as the archives of the list. > > Don't forget that the list archives comprise a tremendous amount of information (Over three years of messages and answers).Feel free to browse them at your convenience. > > LET'S HEAR FROM SOME OF YOU LURKERS out there! If you have a comment or question, chances are there is a person who has been around a while who can help you out with AT LEAST an educated guess for an answer! If not,we can steer you in the right direction with a good website to go to, > > Blessings and Peace, > > Atwood-Stack, Founder > Alan , Web & List Editor > Jack , Newsletter Editor > Pat Bias, List Editor > Ron Dotson, List Editor > Orin, List Editor > , List Editor > and any others who help in any way (thank you!) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 If you are old enough to get the disease, you are old enough to be treated for it using the best medicines available at this time. Your rheumy sounds nuts. My recommendation would be to find a better rheumatologist - one that wants to work with you to pro-actively fight the disease rather than the current rheumy who wants to wait until your body has been permanently damaged. Wishing you wellness, Kathy F. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 >>>I'm 26 and have had P for 7 years. What do you think I should consider? The rheum. said he is not going to try anything other than NSAIDS for quite a while because I am so young. I'm worried more damage is occuring and I would like to stop it sooner rather than later.<<< Age in my opinion is the most ridiculous excuse for not treating PA that I have ever heard. Very young children develop RA and I have never head of a doctor telling a parent that they were too young to be treated for it. PA is very much like RA in many respects; PA can cripple in very similar ways. In fact PA can be worse because very few people know and understand what it means to be diagnosed with PA. I am 43 and I know it may be hard for those in their 20's to believe but it's my opinion that I am `too young' to have this disease. But unfortunately this disease is no respecter of persons. It doesn't matter how old you are, what your gender, race or religious background is. What matters is you're sick and this illness is slowly destroying you life. You have every right to expect the doctor treat you in the most effective way possible regardless of his personal prejudice or beliefs. In my personal opinion it's time for you to find another Rheumatologist. Pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Yeah everything you said is what I'm afraid of. I have seen 3 rheumatologists so far. The first said there was nothing wrong with me, the second (after waiting an hour to see him the first time and then the second time I had to leave after waiting an hour and a half) gave a me a little pat on the head, agreed something was going on but it seemed mild, and said call me if it gets worse. My hands and feet weren't affected at this point. This third doctor is the most sympathetic " acting " which doesn't say much. He said I definitely have PA and the disease is probably progressing past ibuprofen but he's not going to try biologics until he's tried every other NSAID. I don't know where else to go at this point? I'm open to any and all suggestions. > First of all. not all RDs are created equal. If you are not getting > positive results, get a second opinion preferably from a younger person with > experience in modern biologic drugs. I had similar problems with my hands. > Enbrel has reversed the disease but I have permanent joint damage caused by > the disease before starting Enbrel. I had 9 joints affected. All resolved > eventually but 3. Unless you want these crooked fingers for the rest of > your life I would suggest you find an RD that will treat you more > aggressively with a biologic drug. > > This disease is a real drag and you have to be your own advocate. I > demanded to try Enbrel before it was even approved for PA. Without it I > would be a cripple and probably not be here the way my PA was progressing. > Sometimes PA is cyclic and Enbrel can get you through a flare lasting months > or years. If your immune system normalizes, you may then be able to reduce > or eliminate it. I now only take one injection per week and the occasional > Viox compared to the pharmacopia of poisons I had to endure before starting > Enbrel. R.E. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 Thanks Janet and , I also have a background in health care. I have a B.S. in recreational therapy and am going for my R.N. now. I have worked in health care for 6 years. That's what infuriates me I guess. I am not one to go running to a MD when I get the sniffles. I really would like to stop the pain but more so I would like to stop the damage now, rather than later. I have been to 3 rheumatologists over the course of a year. The first said my blood work came back fine. There was nothing wrong. The second ( a year later) said there was something wrong but for every appt I had I would have to wait an hour to get in and then the second one after waiting the 1 1/2 I had to leave without seeing him. He was very abrasive when I did get in so I tried yet another rheum. Well he's not going to move to a biologic without trying all the NSAIDS first, which don't appear to be helping. I'm sore, frustrated, and just bitter. I live in the southern NH area. I work near Boston and am seeing a rheum in Winchester area. If you know any good rheumatologists in that area, please pass them along. Thanks again for your replies! C > > In a message dated 7/2/2004 8:32:43 AM Eastern Standard Time, > dosgatos22002@y... writes: > > I'm 26 and have had P for 7 years. What do you think I should > consider? The rheum. said he is not going to try anything other > than NSAIDS for quite a while because I am so young. I'm worried > more damage is occuring and I would like to stop it sooner rather > than later. > Thanks for your thoughts, > > > Hello, > > Yes, you are young but you are also the only one who can say how much pain > you are in. If your pains keep progressing then you can have further damage > if nothing is helping you. I believe I had PA since my 20's and I am now > 50. Most doctors blew me off including a rheumy around here that was supposed > to be good. I only got diagnosed about a year ago when symptoms became > severe. Listen to your body and if you are not happy with the doctor then see if > you can go to one who will listen. Where do you live? > Janet > > [Editor's Note: I'm 54, and have had PS and AS since 17....I ABSOLUTELY AGREE with Janet: You MUST take charge of your care. Listen to the docs; let them be your Congress (advise and consent role), but YOU be the President (the executive decision-maker). If you don't like the direction a doc is leading, fire her/him and get another. If you're being unwise or unrealistic, odds are strong no doc (worth anything) will agree. Good, confident (read competent) docs want you to be educated about your disease, and involved in your treatment; insecure (and that means shaky skills) doctors want you dumb and acquiescent. Seven years of medical-related education (B.S., M.S, Counseling Psychology & Psychopharmacology), a career in medical-related fields, and 37 years education as a Rheumatological & Internal Medicine services consumer, have all taught me the above (O yeah: and this advice from a 30-year RN: " Don't fall asleep in the hospital... " ;-); anyone with a like background--and the brains God Gave a Gopher--will tell you the same damn thing. > > Okay, then, from form to substance: As Janet observed, and pain (intensity) is a fairly reasonable guide to some-to-most likely damage-producing events & conditions extant within you (although: do not rely on pain alone as a guide to damage production, for any more than a couple of months!). So make your judgement whether palliatives (read: symptom-reducing meds that do not touch underlying disease processes, and therefore allow damage to continue) also known as NSAIDs, which I just don't like in general; the risk/benefit profile is poor in my view: remarkably little pain relief, some inflammation reduction; at the risk of GI problems, and more. Aspirin is just as effective. If you can't take aspirin, then maybe. But if you're in more than nuisance pain, you need a centrally-acting analgesic. > > SO: If you are concerned about damage--I was 30 before taking a DMARD (disease-modifier), methotrexate, and I'm paying for that now, in pain, limitation, and as I am now applying for SS Disability--get on about fighting the disease, not the symptoms. > > D. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2004 Report Share Posted July 4, 2004 In a message dated 7/4/2004 8:23:59 AM Eastern Standard Time, dosgatos22002@... writes: He said I definitely have PA and the disease is probably progressing past ibuprofen but he's not going to try biologics until he's tried every other NSAID. I don't know where else to go at this point? I'm open to any and all suggestions. Why don't you print all these posts from those of us who have been where you are and show them to the 3rd doc. Then perhaps you can tell him you do not want to wait until all the NSAIDS fail. I went through all the NSAIDS first and now I am sorry someone did not diagnose me sooner. I am also a few credits away from my RN but due to knees and feet and brain fog never finished. Don't let this happen to you. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2004 Report Share Posted July 4, 2004 Dear Clair, I can tell you are really frustrated with your doctors and you have every right to be. Your story sounds so much like mine it isn’t funny. The only difference is it took me seeing 5 rheumatologists before I found one who would work with me. The first one, who I had for almost 13 years developed cancer and scaled down his practice. He was 4 hours away, but I used to drive and see him regardless, but my arthritis got too bad to make the trips. He had been treating me for fibromyalgia for over 13 years. So I had to say good by to a great doctor. Then my nightmare of finding a good rheumatologist began. The first two told me I had osteoarthritis, even though I told them the pain came on almost overnight. (I know that Osteoarthritis takes years to develop and I was only 43). The next doctor spent a whole year with me and never could figure out what was wrong with me. When I went for a 2nd opinion he got furious and said any doctor could just pick a diagnosis out of the air. That was when I decided he was a real jerk and moved on. I should have left him ages ago, but I kept hoping he could figure it out. I ended up with the doctor who gave me the 2nd opinion and who had diagnosed PA. It still hasn’t been a perfect relationship since he is almost impossible to get into to see him. He also has nearly killed me twice with new drugs, but that really wasn’t his fault. We still haven’t found a drug that I can take that helps me. So far the only thing that has helped me has been predinsone, but it has so many side effects you end up almost as miserable just in different ways. I’m currently trying to get off completely after being on it for 2 years. I also had severe respiratory distress after a trial of Humira and ended up on 60mg of predinsone and oxygen. I’ve finally got it down to 10mg and hopefully some of the Cushing’ s symptoms I have been dealing with will leave me soon. Of course the pain is coming back and I’m trying not to lose control of my pain. So I guess what I’m trying to say is keep looking for a good doctor. They are out there, but they aren’t easy to find. I have seen many doctors over the years for my other health problems.,.cardilogist, Ob/gyns, Internists, pulmonary specialists, allergists, and pain management doctors. I have to admit that I think rheumatologists are the most arrogant of the bunch and the most stubborn to change their opinions on anything. I think most of them refuse to give out pain medications and feel like you should just “deal” with the pain, rather than ever have a problem with addiction. For me going into pain management saved my life. By the time I was correctly diagnosed so much damage had been done to my joints that I’m in chronic pain almost every hour of every day. My jaw is almost completely destroyed on the right side and Imp facing complete jaw replacement in the future. I’m holding off as long as possible since it’s such an uncertain surgery. I have damage in many other joints but I won’t go into it all now. Unfortunately, you still need to find a good rheumatologist and if the pain were really severe I would look into pain management. Sometimes even with the correct medication you still might need some advice or help from a good pain doctor. I really feel l like mine saved my life. I wish I could give you some great advice, but the main thing is to not give up. You shouldn’t have to “settle” for a doctor and it’s not worth it in the long run when you do. Feel free to write me anytime. At least I can listen and offer you support. Take care and keep in touch. Let me know how it all works out and if you do find a good doctor. Take care and remember you aren’t alone. Love, Fran [ ] Re: new here Yeah everything you said is what I'm afraid of. I have seen 3 rheumatologists so far. The first said there was nothing wrong with me, the second (after waiting an hour to see him the first time and then the second time I had to leave after waiting an hour and a half) gave a me a little pat on the head, agreed something was going on but it seemed mild, and said call me if it gets worse. My hands and feet weren't affected at this point. This third doctor is the most sympathetic " acting " which doesn't say much. He said I definitely have PA and the disease is probably progressing past ibuprofen but he's not going to try biologics until he's tried every other NSAID. I don't know where else to go at this point? I'm open to any and all suggestions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 I had planned on telling him about these conversations/posts I had with others going through this but you're right I should just print them up and also show him so pics. Then tell him I would rather stop the damage sooner than later. Nursing school is such hard work. I don't want it to be all in vain you know. I don't want to get so close and bust my butt in the process to eventually not being able to do it. I already am experiencing difficulties in doing things i.e. drawing up syringes, moving people, etc. Great idea Janet! I think I will do that... THanks! > > In a message dated 7/4/2004 8:23:59 AM Eastern Standard Time, > dosgatos22002@y... writes: > > He said I > definitely have PA and the disease is probably progressing past > ibuprofen but he's not going to try biologics until he's tried every > other NSAID. I don't know where else to go at this point? I'm open > to any and all suggestions. > > > Why don't you print all these posts from those of us who have been where you > are and show them to the 3rd doc. Then perhaps you can tell him you do not > want to wait until all the NSAIDS fail. I went through all the NSAIDS first > and now I am sorry someone did not diagnose me sooner. I am also a few > credits away from my RN but due to knees and feet and brain fog never finished. > Don't let this happen to you. > Janet > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2004 Report Share Posted July 13, 2004 Hi , I kinda know how you feel. I have slowly progressed through various medication through the years. Indocid and Myocrisin(Gold), Indocid and MTX and more recently Indocid, MTX and Ciclosporin. It looks like I will be going on to Enbrel soon (This midweek hopefully) It has taken a long time but its not the Rheumy's fault in this case. The UK government take an interest due to the cost and so the NHS needs to justify putting the person on the drug as in " Well we have tried everything else and here is the proof " In the time between the Rheumy first suggesting Enbrel and now, I have a third finger affected and also more worryingly my right knee. I already had two fingers(Pinky on my right hand, the one next to it on my left) which are approximately 1/2 " smaller than they used to be due to pencil/cup syndrome.(Think that is the same as the sausage fingers you see mentioned here quite often) Toes are pretty deformed as well and my right wrist hardly moves now so if it is possible for you to get your Rheumy to speed it up a little it would be best if you can. It could save a couple of digits Lol. Good luck, . PS: I thought you might be right about peeling oranges being the cause but then I realised that I've never peeled one with my feet.Lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2004 Report Share Posted July 17, 2004 Hi Kitty, I'm fairly new on this list too. I found the information about the hair metals and essential elements test in the files of this listserve to be very helpful. The mercury doesn't show up from past exposure in the mercury category, but it does affect how the essential elements come out. My daughter met 3 of the 3 counting rules described, as well as being very high in lead and arsenic and high in many other heavy metals. I started chelating a year ago when she was nine, but I sure wish I'd have known when she was age 4 what I know now. You have a better chance of seeing more positive change by starting your search while your daughter is younger. Amy ) > I am new here. My name is Kitty. I have a 4 year old daughter with > autism that I believe was a direct result of her vaccinations. They > did not tell me that thermasol was mercury. I trusted them. Big > mistake. As soon as I discovered what it was I stopped vaccinating. > Unfortunatly the damage was done in Savannah. I had an older child > that suffered a little. 's mental abilities were well above her > age until the vaccinations. After which she stopped doing the things > she could do before and became as the doctor's call it " normal " She > had begun reading at 2, then she forgot all her alphabet and numbers. > SHe lost her photographic memory and I had to reteach her everything. > My youngest is 3 now, She has not been vaccinated since she was > 4 months old, and she is fine. I find it hard to believe that the two > children of mine that recieved the vaccinations got hurt, while the > one that didn't remained unharmed. THere is a link. I am looking for > all the information I can to prove that this is what happened to my > daughter. I don't trust doctors. I made that mistake. I take them to > the doctors if they need medical treatment, but I am the type of > person now that stands over them with a microscope annalysing > everything they do. Savannah has not been to a doctor in over a year, > she hasn't needed one (spite her therapy doctors)I need to know what > test are most effective for detecting mercury. I have heard that > urine test are not the best. If someone can give advice, I would be > greatful. Thank you > > Kitty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 >>I need to know what > test are most effective for detecting mercury. I have heard that > urine test are not the best. I have test information on this page http://www.danasview.net/chelate.htm Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2004 Report Share Posted July 22, 2004 > I am new here. My name is Kitty. I have a 4 year old daughter with > autism that I believe was a direct result of her vaccinations. They > did not tell me that thermasol was mercury. I trusted them. Big > mistake. As soon as I discovered what it was I stopped vaccinating. > Unfortunatly the damage was done in Savannah. I had an older child > that suffered a little. 's mental abilities were well above her > age until the vaccinations. After which she stopped doing the things > she could do before and became as the doctor's call it " normal " She > had begun reading at 2, then she forgot all her alphabet and numbers. > SHe lost her photographic memory and I had to reteach her everything. > My youngest is 3 now, She has not been vaccinated since she was > 4 months old, and she is fine. I find it hard to believe that the two > children of mine that recieved the vaccinations got hurt, while the > one that didn't remained unharmed. THere is a link. I am looking for > all the information I can to prove that this is what happened to my > daughter. I really don't know much about proving things like this. I'm more interested in how to make things better. But any of the lawyers working on mercury toxicity cases could tell you about what the courts think " proof " looks like. good wishes, Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2004 Report Share Posted August 2, 2004 there is a very good group but I can't remember the name, but prozac was part of it. They can help you wean off of prozac and tell you why you should. Gracia > First of all, if your MD thinks you need Prozac, you should consider staying on it. Talk this over with your doctor. Tell the doctor why you want off, and let the doctor give you the rationale for staying on it. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2004 Report Share Posted August 3, 2004 Welcome, Mona. Jan Mona wrote: >Hi all. I just joined the group and would like to introduce myself...my name is Mona , age 46 this month, my doc just called in my first Rx for Synthroid...and I have tons of questions... > >Peace, Mona > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2004 Report Share Posted August 5, 2004 , sorry so long in getting back to you...busy life...only home Mondays and Thursdays... No, I just don't think my depression is 'life' related...I have a wonderful life...and just want to get off the Prozac if it no really needed. Hugs, Mona Re: Re: New here Do you mind sharing why you want to get off of the Prozac? Is it causing problems or is it just the idea of taking an antidepressant that bothers you? Mona Anne <PerhapsTodayLord@...> wrote:, good advice...I see my doc in 6 weeks and will point all this out...believe me...I'm taking notes from the group...this is a wonderful resource...thanks to all of you here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2004 Report Share Posted August 5, 2004 Gracia, if you remember the name please tell me. Hugs, Mona Re: Re: New here there is a very good group but I can't remember the name, but prozac was part of it. They can help you wean off of prozac and tell you why you should. Gracia > First of all, if your MD thinks you need Prozac, you should consider staying on it. Talk this over with your doctor. Tell the doctor why you want off, and let the doctor give you the rationale for staying on it. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 Thank you for this information...I will be seeing my doc in 5 weeks and will talk at length with her about this...self education is a very helpful tool when talking with one's doc...they tend to take your concerns much more seriously...if you are well armed. Hugs, Mona in Maine So You REALLY Want a Ministry? Here is one that is FREE, EASY and you don't even have to leave home to do it... http://www.wordforlife.com/ptm/stamps.html B-day list: http://www.BirthdayAlarm.com/dob/19778686a794906108b362 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 Hi Marty Thanks for responding. It looks like you're all signed up! I wish you the best of luck. I'm sure all will go well. Why wait any longer? From all I've read and talked with people, they have all said not to wait, when you can be pain free sooner. I feel so limited now, limping around, calculating every move I make so as not to send a piercing pain down my leg. You must know the feeling. I appreciate your input. Since my focus right now is location and insurance, I have been looking at cities in my state. There are quite a few PAO surgeons listed on the Hipwomen site, but majority are all over the country. I got the name of a doctor at the Crystal Clinic in Akron, OH. (Again, closer in proximity to me) I am told he specializes in the hip and does PAO's and THR's. I'll be seeing him in a few weeks. I know patients he has worked on, one being hip replacement. His name is Dr. Arne Melby, and heard good things about him. (and the Clinic too) By now I really just need someone to evaluate whether I can and/or should get a PAO or THR. I've seen two OS here. One is all for a PAO if a candidate, the other is sketchy (maybe because he does not know enough about them...hasn't performed one) He believes it is may not be as easy to do a THR down the line on a patient who has had a PAO, with alteration of the anatomy. I saw that between Jan and now my xrays show the space in my joint has narrowed so much that it is bone on bone. Explains the increasing pain. Even arthritis is only minimal to moderate. Liz > Hi > I'm Liz. Been reading quite a bit about CHD, PAO, THR, > resurfacing. Mostly been participating with Hipwomen group because > I knew very little of hip osteotomies. Resurfacing seems too new > and tough to find info and opinions other than the Hippie group that > lists many success stories. > > I am 42 just diagnosed in Jan. with CHD, never knew I had it, until > it was time to reveal itself! What I thought was a muscle pull down > front of right groin turned out to be CHD. I have been in sports > all my life, and up to OCT 2003, a runner for 15 years. I guess it > was time for the hip to wear down! > > I thought I could get someone's spin on things from this group. I > have seen two OS here in Youngstown, OH. They agree on the CHD, do > THR's all the time (maybe not a lot my age), but do not do PAO or > resurfacing. SO it's tough for them to evaluate whether one surgery > would be better for me. Have you experienced this scenerio? > > Do any of you have CHD and gotten replacements at a young age? What > steers a patient toward a THR instead of a PAO? I know it depends > on the patient and the hip, but the thought of 7-12 month recovery > of a PAO is not comforting. My husband is very helpful, but with > three young kids active in sports and school, and part time work, I > am on the run! > > I'd appreciate any responses offered! > > Best regards, > Liz > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 something like prozacawareness you could do a search at groups with prozac in the subject. Gracia > Gracia, if you remember the name please tell me. > > Hugs, Mona > Re: Re: New here > > > > there is a very good group but I can't remember the name, but prozac > was part of it. They can help you wean off of prozac and tell you why you > should. > Gracia > > > First of all, if your MD thinks you need Prozac, you should consider > staying on it. Talk this over with your doctor. Tell the doctor why you > want off, and let the doctor give you the rationale for staying on it. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Mona, look at http://www.drrind.com to see if you also have adrenal symptoms. Thyroid meds+cortisol have helped many with depression. Gracia > , sorry so long in getting back to you...busy life...only home Mondays and Thursdays... > No, I just don't think my depression is 'life' related...I have a wonderful life...and just want to get off the Prozac if it no really needed. > > Hugs, Mona > Re: Re: New here > > > Do you mind sharing why you want to get off of the Prozac? Is it causing problems or is it just the idea of taking an antidepressant that bothers you? > > Mona Anne <PerhapsTodayLord@...> wrote:, good advice...I see my doc in 6 weeks and will point all this out...believe me...I'm taking notes from the group...this is a wonderful resource...thanks to all of you here. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Hi Mona, I live in Maine near Belfast. Where are you? I haven't found too many good docs in Maine. Gracia > Thank you for this information...I will be seeing my doc in 5 weeks and will talk at length with her about this...self education is a very helpful tool when talking with one's doc...they tend to take your concerns much more seriously...if you are well armed. > > Hugs, Mona in Maine > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Hi Marty I repied several days ago, but never saw my message posted. My original message took a few days to be posted. I don't know why, everyone elses goes up immediately. So I'll try it again. I'm sure you're nervous and excited about your upcoming THR. I trust all will go well. Not too far down the line you'll be feeling better, from all I've read. And my mom has had two THR's, but at 61 and 71. That's why I was surprised at my diagnosis at 42! I have an appt with Dr. Melby @ the Crystal Clinic in Akron, OH in closer proximity to me. After seeing 2-3 OS here, I want him to evaluate whether one surgery could be better for me than another (PAO vs. THR) I've read the resurfacing postings, and sound successful. Just still fairly new, with a handful a docs preforming it. I'm told Dr. Melby has done both PAO and THR, and can tell what I am a candidate for. I know a couple of people who have seen him. From Jan. to now, my xrays have gone from thin cartilage to bone on bone. Don't know what it means, but can't wait to reach a final decision sometime soon. Hope this makes it to the board. I wanted to respond and thank you for writing back. Again, best wishes and good health to you. Liz > Hi > I'm Liz. Been reading quite a bit about CHD, PAO, THR, > resurfacing. Mostly been participating with Hipwomen group because > I knew very little of hip osteotomies. Resurfacing seems too new > and tough to find info and opinions other than the Hippie group that > lists many success stories. > > I am 42 just diagnosed in Jan. with CHD, never knew I had it, until > it was time to reveal itself! What I thought was a muscle pull down > front of right groin turned out to be CHD. I have been in sports > all my life, and up to OCT 2003, a runner for 15 years. I guess it > was time for the hip to wear down! > > I thought I could get someone's spin on things from this group. I > have seen two OS here in Youngstown, OH. They agree on the CHD, do > THR's all the time (maybe not a lot my age), but do not do PAO or > resurfacing. SO it's tough for them to evaluate whether one surgery > would be better for me. Have you experienced this scenerio? > > Do any of you have CHD and gotten replacements at a young age? What > steers a patient toward a THR instead of a PAO? I know it depends > on the patient and the hip, but the thought of 7-12 month recovery > of a PAO is not comforting. My husband is very helpful, but with > three young kids active in sports and school, and part time work, I > am on the run! > > I'd appreciate any responses offered! > > Best regards, > Liz > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Gracia, We are just south of Augusta...we come up to Belfast a couple times a year...it's so beautiful up there...I grew up on the coast of Maine...my doc is in Winthrop Maine...she is a great doc but she is a 'by the book' kind and after 10 years ...treating my thyroid is a 'last resort' requested by ME! not suggested by her...she wants me to try the new 'lap band' surgery... http://www.obesitylapbandsurgery.com/index.html I am not ready to blame food as the problem... I've counted cal/protein/fat etc., etc. far too long to believe I have no control over what I may or may not be doing to my body...I seldom overeat...I am a very busy person and play with 4 active children three days a week...I was always very thin most of my life then about age 35 I started gaining weight and getting very depressed and cold and couldn't get enough sleep...now at 46 I'm over weight...and hate my body...but I manage to get through each day...as a general rule, I have a great life...wonderful husband, great son age 22, nice home, great friends...so on and so forth... Hugs, Mona Re: Re: New here Hi Mona, I live in Maine near Belfast. Where are you? I haven't found too many good docs in Maine. Gracia > Thank you for this information...I will be seeing my doc in 5 weeks and will talk at length with her about this...self education is a very helpful tool when talking with one's doc...they tend to take your concerns much more seriously...if you are well armed. > > Hugs, Mona in Maine > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Liz, Best wishes as you determine the best route for you. You seem well informed, so I know you'll sort through all the information and opinions to make the best decision for you. I'm anxiously looking forward to my surgery in 8 days and look forward to the day (maybe by Thanksgiving?) that I'll be able to hike with my husband, walk on the beach without pain, go shopping with my daughter without having to plan "pain stops". And to maybe be able to wear shoes without a lift? Thanks to all on this listserve - your words of encouragement and news about the ups and downs of rehab and recovery have helped me to feel very prepared for the next few months. martyethom42 <ethom42@...> wrote: Hi MartyI repied several days ago, but never saw my message posted. My original message took a few days to be posted. I don't know why, everyone elses goes up immediately. So I'll try it again. I'm sure you're nervous and excited about your upcoming THR. I trust all will go well. Not too far down the line you'll be feeling better, from all I've read. And my mom has had two THR's, but at 61 and 71. That's why I was surprised at my diagnosis at 42!I have an appt with Dr. Melby @ the Crystal Clinic in Akron, OH in closer proximity to me. After seeing 2-3 OS here, I want him to evaluate whether one surgery could be better for me than another (PAO vs. THR) I've read the resurfacing postings, and sound successful. Just still fairly new, with a handful a docs preforming it. I'm told Dr. Melby has done both PAO and THR, and can tell what I am a candidate for. I know a couple of people who have seen him.From Jan. to now, my xrays have gone from thin cartilage to bone on bone. Don't know what it means, but can't wait to reach a final decision sometime soon. Hope this makes it to the board. I wanted to respond and thank you for writing back. Again, best wishes and good health to you.Liz> Hi> I'm Liz. Been reading quite a bit about CHD, PAO, THR, > resurfacing. Mostly been participating with Hipwomen group because > I knew very little of hip osteotomies. Resurfacing seems too new > and tough to find info and opinions other than the Hippie group that > lists many success stories.> > I am 42 just diagnosed in Jan. with CHD, never knew I had it, until > it was time to reveal itself! What I thought was a muscle pull down > front of right groin turned out to be CHD. I have been in sports > all my life, and up to OCT 2003, a runner for 15 years. I guess it > was time for the hip to wear down!> > I thought I could get someone's spin on things from this group. I > have seen two OS here in Youngstown, OH. They agree on the CHD, do > THR's all the time (maybe not a lot my age), but do not do PAO or > resurfacing. SO it's tough for them to evaluate whether one surgery > would be better for me. Have you experienced this scenerio? > > Do any of you have CHD and gotten replacements at a young age? What > steers a patient toward a THR instead of a PAO? I know it depends > on the patient and the hip, but the thought of 7-12 month recovery > of a PAO is not comforting. My husband is very helpful, but with > three young kids active in sports and school, and part time work, I > am on the run!> > I'd appreciate any responses offered!> > Best regards,> Liz> > > > > > > > > Be your own advocate! The best patient is an informed patient! > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.