Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 Hi Dennis and welcome to the group. Everyone is different so you will hear a variety of experiences. When my doc said he wanted me to start tx, I said "No thanks." He left the room and my husbadn said, "Please do this for us." Well, that sealed the deal for me. 50% chance of cure beats 100% chance of ending up on a liver donor transplant list any day. I just started my 11th week and I've had good weeks and bad. I'm just trying to stay in the moment and embrace my reduced capacity. I started doing crossword puzzles to jump start my brain and was actually able to read the Introduction to "Hitch" the other day. Losing my ability to read is really the hardest thing and most frustrating. I love to read. I just tell people I am on sabbatical. It shuts them up and leaves me free to reveal at my own comfort level. Don't worry about how you contracted it. I was also young and dumb in the 70's but it has been the better part of 25 years since I drank or did drugs and 8 years since I smoked cigarettes. Keep posting. It helps. Andi in Louisiana -----Original Message-----From: Dennis Yugulis <dennis6450@...> [mailto:dennis6450@...]Sent: Thursday, January 09, 2003 9:04 PM Subject: [ ] New MemberHi everyone, My name is Dennis and I live in Ohio. I found out last Janurary that I have Hep C and a Biopsy also revealed that I have early Cihrossis. I am also a Veteran.I haven't started any treatment yet. The only thing I'm doing is taking Milk Thistle three times a day.I am contemplating treatment but am worried about the side affects. I probably contracted it around 1975 when in my young and dumber days I was experimenting with drugs while in the service.I see the VA has a program with the new pegelated interferon but it's still only 51% effective. My doctor thinks that I'm waiting too long to do somenthing but it's taken me awhile to adjust to the diagnosis. I was a little shy about joining a group but here I am. Any advice and experience would be appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2003 Report Share Posted January 13, 2003 Dr. Joy Ty Sy, What an incredible wife you are! My wish would be for everyone to be supported by a loving significant other, as you are to your spouse. In a message dated 1/13/2003 3:32:48 AM Eastern Standard Time, joy_ty@... writes: > I'm glad there's a support group like this, just the knowledge that I/we are not alone gives me comfort. > I pray that God would continue to give each one of the us the STRENGTH that we need and for all the patients out there, the power to endure the pain... God is he great physician and the ultimate Healer. > I hope to get to know you guys better. > Sincerely, > Dr. Joy Ty - Sy > My husbands email add is jbsy@... I'm sure he > would appreciate any form of encouragement and support... > Thanks again Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2003 Report Share Posted January 19, 2003 > ... I have finally found a wonderful rheumatologist, > Dr. n Sackler, at the Arthritis Centers of Texas in Dallas. > > Sue Brown Sue, I hope you don't mind that I've added Dr. Sackler's name to the list of recommended doctors in our Database. If so, let me know and I'll delete it. -- Ron Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2003 Report Share Posted January 19, 2003 Hi Marti, I have probably already asked you this, but what % of your body did the P cover? Thanks! In a message dated 1/19/03 4:47:07 AM Eastern Standard Time, mlw402@... writes: > I also got no relief from methotrexate and numerous other meds. Have > been on Remicade for 5mos and the effect on p was immediate and dramatic. > > Some people actually did not believe me when I told them my skin was > completely clear. It is much harder for me to tell how it is effecting the > > pa. There was no dramatic difference. It may help a little. I have had > many iv roomies and it is a miracle for some of their pain. Others dropped > > out of the treatment for various reasons. Most of them prefer Enbrel but > are > on Remicade(as I AM ) for insurance reasons. > > I think sometimes we just have to try something before we know if it > will help. Seems to be hard to predict and vary a lot among people. > > Good Luck! HangInthere > > Marti W. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2003 Report Share Posted January 19, 2003 > > ... I have finally found a wonderful rheumatologist, > > Dr. n Sackler, at the Arthritis Centers of Texas in Dallas. > > > > Sue Brown > > > Sue, > > I hope you don't mind that I've added Dr. Sackler's name to the list > of recommended doctors in our Database. If so, let me know and I'll > delete it. > > -- Ron Ron, I don't mind at all. Thanks Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2003 Report Share Posted January 19, 2003 > Hi Sue, > > Welcome. I am a new member too. Just joined last week. Glad you > finallly gor correct diagnosis and good rheumy. I think it helps (at least > in long run) to know what I am dealing with or to give it an official name. > > I also got no relief from methotrexate and numerous other meds. Have > been on Remicade for 5mos and the effect on p was immediate and dramatic. > Some people actually did not believe me when I told them my skin was > completely clear. It is much harder for me to tell how it is effecting the > pa. There was no dramatic difference. It may help a little. I have had > many iv roomies and it is a miracle for some of their pain. Others dropped > out of the treatment for various reasons. Most of them prefer Enbrel but are > on Remicade(as I AM ) for insurance reasons. > > I think sometimes we just have to try something before we know if it > will help. Seems to be hard to predict and vary a lot among people. > > Good Luck! HangInthere > > Marti W. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2003 Report Share Posted January 19, 2003 Hi all - I have a great rheumatologist too. His name is Dr. Javan Popovich in Houston TX. He has never done a breast exam. PS: His nurse, Freddy, is also a male. J [Ed. Note: Duly noted and entered into the " Recommended Doctors " list in the forum database. Thanks for the tip . Ron] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2003 Report Share Posted January 26, 2003 In a message dated 1/26/2003 7:37:56 PM Eastern Standard Time, drmstr57@... writes: > Sandy Master > DreamMastesr Shelties > Panama City, FL > > Hi Sandy From your signature line, are you a dog breeder? If so I'd seriously look into Lyme Disease not only because of your symptoms but also because if you are a breeder you are around animals all the time and it is very easy to get bit by a tick thats on an animal. ___________________________________________________ YRobyn In SouthCarolinaY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2003 Report Share Posted January 26, 2003 My biggest problem with that senario is that I have only seen two ticks in the 10 plus years I have lived here. At least on my own dogs in my own yard. I have seen them in other breeder's yards. Parasites of all kinds are always a concern when talking about breeding animals. Especially when they live in the same house with you. I have worked really hard to NOT have parasites. Have had a few fleas, but they have been under control for a long time now. No ticks....but of course the no see ems and mosquitos are rampant here. They do spray for mosquitos....much fear of dis-ease that they carry. Can you get Lyme when you do not see ticks? If so how aand what do I do now? Sandy Re: [ ] new member In a message dated 1/26/2003 7:37:56 PM Eastern Standard Time, drmstr57@... writes: > Sandy Master > DreamMastesr Shelties > Panama City, FL > > Hi Sandy From your signature line, are you a dog breeder? If so I'd seriously look into Lyme Disease not only because of your symptoms but also because if you are a breeder you are around animals all the time and it is very easy to get bit by a tick thats on an animal. ___________________________________________________ YRobyn In SouthCarolinaY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2003 Report Share Posted January 26, 2003 Ticks are everywhere and they are often the size of the period at the end of this sentence. Most people never see ticks or see the tick that gets them. Me included. I did have a rash but I'm in the minority. Most never seem to see a rash. There is some suspicion that Lyme can be transmitted via mosquito but it is unproven. I was diagnosed with classic CFS and Fibro like many many people who now know they have Lyme. Testing is unreliable and most docs are clueless. Check out HYPERLINK " http://clik.to/cfslyme " http://clik.to/cfslyme for more info. I hope you will consider seeking out a lyme literate MD who might be in your area. Basically, you fit the clinical diagnosis of Lyme Disease because you have been diagnosed with Fibromyalgia. With that diagnosis, is supposed to come the elimination of all other diagnoses so it would make sense for you to seek out treatment for Lyme and testing for co-infections like babesiosis, ehrlichiosis and bartonella (from ticks or fleas). Jen HYPERLINK " mailto:heckyeah@... " heckyeah@... --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.443 / Virus Database: 248 - Release Date: 1/10/2003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2003 Report Share Posted January 27, 2003 Sandy, I echo the encouragement from others that you seek out a Lyme-literate doctor and take this very seriously. The symptoms you describe align remarkably with some of the more common Lyme symptoms. Interrupted sleep, joint pain, brain fog, cognitive lapses - - these are all DEFINITELY characteristic of Lyme disease. I think you should absolutely look into it, and prepare yourself to face considerable resistance. Even bringing up Lyme with some doctors can invite reactions like " Lyme disease is just a fad, " and " we don't have Lyme in Florida " (not true - - has been reported in every state but Montana). Feel free to ask questions on this list. There are a lot of people here with a lot of experience! They have been very helpful to me. Jeff >>> drmstr57@... 01/26/03 19:38 PM >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 Hi Elaine, My name is June and I am from Pittsburgh, PA. I was diagnosed with PA May of 2002. My doctor tried prednisone first, but did not want to keep me on that very long due to the weight gain issues. Next we tried Sulfasalazine which and Indomethacin which was not helping either, next we tried MTX with the Indomethacin and that did not help. So the next step was the Remicade treatments which have helped me tremendously the only drawback is I have to go to a hospital for my treatments which take about 4 hours for the whole process. My doctor just informed me that the Enebrel shots are now available and I have the option to switch. I just hate to stop the Remicade because I have had success with the treatments, but giving myself the Enebrel shots would be more convenient. I never had any side effects from any of the drugs I have taken. I also haven't noticed if watching what I eat helps or not. Take care and gentle hugs, June [Ed. Note: Why don't you wait for Humira which is supposed to be available sometime this month? You only need to inject once every two weeks, instead of twice a week as with Enbrel. Ron] > Hi, I came across this group while looking for information. My name > is Elaine and I live in Scotland. I was told about a year ago that > they thought I was suffering from PA. I have had scalp P for 14 > years and about 3 years ago I started getting pains all over. My Dr. > thought it was polymalgia. The pains did not go and he referred me > to a specialist. > > I was put on prednisone - started with 7mg for 3mth, then 6 for 2mth, > 5 for 2 mths, etc I was on it for 18months and have now been off for > 1 month. The aches went but the flare up's didn't. But now all the > aches are coming back. My shoulders are so sore, I find it hard to > turn over in bed! > > I'm due to go back and they are going to put me on MTX. I'm a bit > concerned about it - maybe you can let me know if you are using it > and if it has helped. > > I know I'm not as bad as many people, also my nails are fine - do > other people find this too. My worst is my feet and it is so painful > to walk sometimes especially when I get out of bed in the morning, I > also walk down stairs one at a time - just to help reduce the pain. > > If anyone has found natural remedies or avoiding certain foods which > have helped please let me know. > > Thankyou for listening to me - I'ts hard living with pain and no one > around me really understands. > > E. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 Hi Elaine, I am 28 living with PA. I have NORMAL nails. I did have one time this year where a small pit grew as my nails grew, but as the pit grew out it never returned. I have had this for 5 years (probably longer), and have never had any nail signs until this year. (and even that was short lived) My nails grow strong and healthy, so yes this can be normal. My feet are also my biggest problems. The bottoms get so sore to touch that it hurts like mad to walk. Try a parrafin bath every night. It really helps mine. Please also know that this pain will last for months, and then dissapear for months at a time for no apparent reason. (or atleast that is my experience) My feet were much worse last winter than this winter. I think it's interesting that we both have no nail signs, and very sore feet. I also have one shoulder that aches like mad sometimes! If you need someone to chat with I am here! In a message dated 2/4/2003 5:49:07 AM Eastern Standard Time, keithelaine100@... writes: > I know I'm not as bad as many people, also my nails are fine - do > other people find this too. My worst is my feet and it is so painful > to walk sometimes especially when I get out of bed in the morning, I > also walk down stairs one at a time - just to help reduce the pain. > > If anyone has found natural remedies or avoiding certain foods which > have helped please let me know. > > Thankyou for listening to me - I'ts hard living with pain > and no one > around me really understands. > > E. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 Hi Elaine, I have been where you are now with pain and stiffness as you describe. I know what you mean about taking stairs one at a time. I thought that might be just how life was going to be for me. I got a lot of good relief when I started with methotrexate and pretty much " got my life back " on a fairly low dose. The pre- methotrexate days were a low point in my life. I hope you'll be feeling better soon! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 dimples91867@... writes: > I just hate to stop the Remicade > because I have had success with the treatments, but giving myself the > Enebrel shots would be more convenient. The Remicade is definately not as convenient as Enbrel but I think if the Remicade is working dont quit it until it quits you. The Enbrel may not be as effective for you and the Remicade may not either when you come back to it. Orin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 Elaine, You sure came to the right place to find people who are experiencing exactly what you describe. I found methotrexate did a good job of preventing damage but it made me feel awful. My feet started out being the main problem and although most of my joints seem to be affected my feet are still the worst pain. Heat really makes my feet hurt and walking is too hard to do much of it. I wish you pain relief and much comfort. Cheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2003 Report Share Posted February 4, 2003 I have had PA for about 15 years. My P is not bad and not visible to others, although my nails do have pitting. I have been on Plaquenil for about 10 years. I have also been on various NSIDs, current celebrex. Celebrex has had the best therapeutic effect allowing me to be physically active, including participating in sports activity. The Plaquenil is a disease-modifying agent that has worked very well for me. It is intended to prevent joint damage. It can have the negative side effect of making your P flare, but this has never happened to me. I believe this is why it is not the first treatment of choice for PA patients. However, most importantly, I have had no joint damage. I take 200 mg of each med two times per day. Compared to other treatments, it's easy, avoiding the injections and other inconveniences and side effects. I bring this up, because it seems from your description that your P is also mild. You may want to ask you're rheumy about trying a similar treatment. Good luck Fred Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2003 Report Share Posted February 6, 2003 Thank you for the advice. I have thought about that, why switch from something that has worked so well for me, and take the chance of not having success with the Enebrel. > dimples91867@y... writes: > > I just hate to stop the Remicade > > because I have had success with the treatments, but giving myself the > > Enebrel shots would be more convenient. > > The Remicade is definately not as convenient as Enbrel but I think if the > Remicade is working dont quit it until it quits you. The Enbrel may not be as > effective for you and the Remicade may not either when you come back to it. > Orin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2003 Report Share Posted February 14, 2003 , The first diagnosis that I had was similar to yours. I was referred to a podiatrist with foot pain in the right toe. When he took an x-ray it showed a slight erosion of bone near the toenail. He suspected a bone infection and referred me to an infectious disease doctor. From there I had some type of nuclear medicine tests which showed all of the areas in my foot and anklw which were now hurting (could have shown them that without the nukes ).Everone was stumped and there was talk about IV antibiotics and the like. It just so happened that I went to see my dermatologist about the new breakout of psoriasis and he put me in PUVA therapy and recommended some time on the beach. After three weeks of PUVA and a " tanning vacation " the pain subsided. I discussed this with my dermatologist who referred me to a Rheumatologist. I was diagnosed with PA and have been fighting the tug of war ever since. So far the best treatment for me has been Neoral and PUVA. MTX, Viox, Celebrex and the like just had no effect. I stopped PUVA when my Dermatologist retired and closed shop and the Neoral has been cut in half with the start of Remicade. Remicade worked great for the first three months but now I am experiencing some significant flares first 1 week before treatment and now three weeks before my next treatment. The frustration is that the doctors just say to wait until your appointment. There just does not seem to be any sense of urgency on their part. In the meantime for me work stops, family activity stops and sleep stops from all of the pain. Fortunately these flares seem to come for me only a few times a year. You can sometimes get the feeling that you know more about this disease and how to treat it than the Doctors. > Hello everyone. > > I'm new here, so I thought I'd tell a little about myself. I wanted to share my diagnosis story.. as I thought it might interest some. > By the way, my name is , and I'm 21 years old. > > About a little over two years ago, I woke up with a very bad pain in my foot, and it was swollen. I'm a diabetic, and already had a podiatrist, so I went to him first. He first thought it was some form of mild fracture, or something alone those lines, so he put me in a cast for a week.. going back after that week, there was no improvement, and he kept it on for another week... thinking that since I heal slower than most because of the Diabetes, he'd give it some more time. > > Went back again and still nothing really seemed to be different. He was baffled as to what it migt have been.. but because he is actually a good doctor, he told me straight out that he wasn't sure what was wrong and he didn't want to hurt me. He recommended me to an infectious disease doctor to look at my foot and take tests. > > I had MRI's done as requested by the infectious disease doctor, but for some reason the test results were given to me (which isn't allowed... they're supposed to be sent to the doctor I always thought).. anyway, the lab where I picked up the test results were very close to my Diabetes doctor's office, so I went to show him. > > He took one look at the pictures and said that it was very serious and might need surgery.. I was hospitalized that same day. > > Not really knowing what was going on, there was now a team of about seven doctors being contructed to all look at me, my results and make their assumptions as to what was wrong with me. Probably two different surgeons, my diabetes doctor in the lead, infectious disease doctors, etc... > > I was diagnosed with Osteo-millitus, which is a pretty severe thing because it's extremely hard to get rid of. It's a bone infection. Apparently, they were diagnosing me with a bone infection, although the outside of my foot had no scrapes, cuts, or any other side of an entrance where bacteria could have got in. Their theory was that I took an insulin shot and somehow some bacteria on my skin got into my blood and travelled to my foot.. and I developed the bone infection. > > I was hospitalized for probably a little over a week. It came down to them " finding exactly what type of bacteria is causing the infection " .. I took multiple MRIs, xrays, a test where they radiate your white blood cells, then put them back in you to see where they go.. (assuming you have an infection, the white blood cells will go to that spot...clever) > > There was A LOT of talk about amputation of the toe.. (or foot is what i'm pretty sure they were getting at) ... One surgeon actually said " well, everyone loves having ten toes, but sometimes that's just not reality)... After all the testing they did, they decided to put a pic line in me. (for those that don't know what this is, it is an approximately ten inch long tube that goes in your bicep, into your vein, up around your shoulder, right above your heart.. supplying you with whatever IV medicine is hooked up to it) > > I was sent home on IV antibiotics to be supplied through the pic line, hoping that the medicine they were giving was the right one for the bacteria i had. > > I had a home nurse to take blood tests every four days, which my sed rates were Always elevated, which was their main way of figuring out if the infection was getting better or not... > > My left knee then swelled up which worried the doctor quite a bit, as he believed this was a sign that the infection was spreading.. and ordered my knee be drained and the fluid tested. This was absolutely the most painful thing I've ever been through in my whole life. They took something like six or more vials out of my knee.. I will never forget how painful that was. Of course the fluid tested negative for any infection... the doctor figured that the fact that I wasn't walking as much anymore, and then maybe tried to walk a little traumatized my knee, which, in turn, swelled up with fluid. > > It was after i went home i started to loose the muscle in my legs from being bedridden. I was soon having difficulty walking.. After weeks, they theorized that the medicine was not working, and changed to a stronger antibiotic.. this time, Rosephen (I think I spelled that right) After being on this for a while, I started to throw up everything I ate. I lost 35 pounds in all from it.. and by that time my leg muscles had totally deteriorated. My legs looked like Jello, and had absolutlely no muscle left, I could barely stand.. and used a wheel chair most of the time. > > The antibiotics being in me so long, and the sed rates still high, they figured that the medicine i was on was still not working for the bacteria that was in me. I was sent to a surgeon to look me over before he would do a biopsy to scrape the bone in my foot and test to see what bacteria it was. I, of course, refused to go to the same surgeon that did the knee draining, and picked someone totally different (Thank God)... As I was sitting in the waiting room filling out the papers, when it wanted me to list all other conditions that I had... I thought (should I write psoriasis?... does it even matter). I'm so happy that I did. > > He looked me over and told me flat out that he totally didn't believe I had a bone infection, and that he has seen this so many times, at least twice a month. It made me sick to think that this kind of thing happened THAT MUCH! He told me he'd look over everything and talk my case over with some other doctors and get back to me after he saw some test results. > > He called me on my birthday and said to tell the nurse to take the pic line out, gave me the name of a rheumatist, and told me that I had psoriatic arthritis. If I hadn't gone to see him, I would have almost certainly had something amputated.. toe, foot, who knows.. whatever it is, it's part of my body. After that my doctor called me and actually said " Well, Dr. Levine seems to be convinced it's not an infection.. it's arthritis.. I don't even know anymore " .... > > This incident has left me with a lot of pain, anger, and fear of doctors. Not to mention I had to pretty much learn how to walk all over again. It is extremely painful to regain muscle after it is lost. A little more than two years later and the muscles are still very weak sometimes. I have plans to start physical therapy and get back to the way I used to be. Just because I have psoriatic arthritis doesn't mean I shouldn't be able to jump, or run, or walk up stairs, etc. like a normal person. > > I've been depressed for a long time, and what happened to me has affected me deeply. It was a horrifying situation. > > Has anyone else had something like this happen to them? Sorry the story was so long, it was months and months and monthhssss of my life... I lost quite a lot and wanted to share the story with people who might be able to understand. > > Thanks a lot guys, > > > > [Ed. Note: Good Lord , that's horrifying! It should be written up in a medical journal. I think I'll send it to my rheumy. Ron] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2003 Report Share Posted February 14, 2003 , that is one the worst PA diagnosis stories I've heard. I think a lot of us with PA went through an initial period of being misdiagnosed. I went to 4 different doctors before I was diagnosed properly. The first three were onto the wrong diagnoses, each different. Fortunately, I am the type of person who prepares and asks a lot of questions. I was not satisfied with their answers as to how they came to their diagnoses. One wanted to operate. Others wanted to begin antibiotics. Within 5 minutes of having walked the rhuemy's exam room, she was telling me she suspected PA. She was able to give me specific reasons why she thought it was PA. My own learning from this, if you go to a surgeon, expect that they will want to operate. It's what they know. Unfortunately, when you have something unusual, you need to make sure you get right specialist. How do you know who that it is? I think it's only by asking lots of questions and deciding for your self if this is the right doctor to be at. I had exactly the same situation with an inner ear problem 25 years ago. I was misdiagnosed and it was suggested I have surgery. Because the problem was unusual, I decided to go for a second opinion at a teaching university in Boston. That doctor was an expert in this type of problem and he told me that he believes that almost any other doctor in the country would have misdiagnosed me. He said what I had was slightly different and the surgery previously suggested would not have helped and could have done damage. His prescription, do nothing. " It's about a 90% change that this will go away " . It did. I glad I went to the second doctor. > Hello everyone. > > I'm new here, so I thought I'd tell a little about myself. I wanted to share my diagnosis story.. as I thought it might interest some. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2003 Report Share Posted February 14, 2003 I am so sorry you went through this. My podiatrist made my diagnosis on my sausage toe and P. I had been with my GP for heel spur and then the sausage toe. It was less than a year before he sent me to the podiatrist. He treated me twice with injections to the toe. When I went in shorts for the third treatment, he saw the P and that was it. I was off to a rhuematologist. Good luck on your rehabilitation. I hope you don't hear from anyone who had to go through what you have! Ks Di [ ] new member > Hello everyone. > > I'm new here, so I thought I'd tell a little about myself. I wanted to share my diagnosis story.. as I thought it might interest some. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2003 Report Share Posted February 14, 2003 Can you imagine, " Oops sorry for amputating your foot when it was PA all along. " I'm glad you finally got an accurate diagnosis and I hope that you will get the appropriate treatment and quickly regain your strength. Just goes to show that not only are the average persons ignorant of this disease but even liscenced doctors and not just one but a whole team! We need to do a better job of raising awareness. If I were to begin printing posters with my desktop printer to put up on the bulletin board at the public library, courthouse, grocery stores, churches, schools etc. What should it include? A dictionary definition, picture of afflicted hands, a link to this message board? Orin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2003 Report Share Posted February 14, 2003 Holy cow ! That is horrifying! I can only think that the diabetes made the Dr.'s lean the way that they did... but that's is just insane!!! I can honestly say that I, probably like you, had NO IDEA that PA even existed until I had it. I probably went to my PCP 5 times before he noticed the little Psoriasis patch on my elbow (how was I to know this had any significance with the stiff fingers I had?) He looked at me and said " Do you have Psoriasis " . When I was responded YES, he was absolutely amazed that I had not told him that. He had an diagnosis for me on the spot that day. I am glad you are here, and I certainly hope you are getting stronger EVERY DAY!!! In a message dated 2/14/2003 1:58:49 AM Eastern Standard Time, Ros@... writes: > This incident has left me with a lot of pain, anger, and fear of doctors. > Not to mention I had to pretty much learn how to walk all over again. It > is extremely painful to regain muscle after it is lost. A little more than > two years later and the muscles are still very weak sometimes. I have > plans to start physical therapy and get back to the way I used to be. Just > because I have psoriatic arthritis doesn't mean I shouldn't be able to > jump, or run, or walk up stairs, etc. like a normal person. > > I've been depressed for a long time, and what happened to me has affected > me deeply. It was a horrifying situation. > > Has anyone else had something like this happen to them? Sorry the story > was so long, it was months and months and monthhssss of my life... I lost > quite a lot and wanted to share the story with people who might be able to > understand. > > Thanks a lot guys, > > > > [Ed. Note: Good Lord , that's horrifying! It should be written up in a > medical journal. I think I'll send it to my rheumy. Ron] > > > Please visit our Psoriatic Arthritis Group's informational web page at: > http://www.wpunj.edu/pa/ -- created and edited by list member > aka(raharris@...). > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2003 Report Share Posted February 14, 2003 , What is Neoral, and what does it do? How does it work? [Ed. Note: A good place to get drug information is http://www.rxlist.com/ Ron] In a message dated 2/14/2003 1:20:10 PM Eastern Standard Time, mlovelady@... writes: > stopped PUVA when my Dermatologist retired and closed > shop and the Neoral has been cut in half with the start of > Remicade. Remicade worked great for the first three months but now > I am experiencing some significant flares first 1 week before > treatment and now three weeks before my next treatment. The > frustration is that the doctors just say to wait until your > appointment. There just does not seem to be any sense of urgency on > their part. In the meantime for me work stops, family activity > stops and sleep stops from all of the pain. Fortunately these > flares seem to come for me only a few times a year. You can > sometimes get the feeling that you know more about this disease and > how to treat it than the Doctors. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2003 Report Share Posted February 15, 2003 Hi Sara, It sounds like you've been through h*ll. I went undiagnosed for quite some time. I have had joint pain on and off for 23 years. The last 7 have been the worst. Toes swelling and toenails all crumbling with psoriasis. Even a rheumy years ago didn't diagnose me right when I told him I thought I had PA. Several months ago I developed bone spurs on several of my fingers where it is swollen and pertruding and my derm said to go to another rheumy because he thought I had PA. This rheumy was great and now I am waiting for my Embrel to come. Hang in there. Janet Quote Link to comment Share on other sites More sharing options...
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