Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 We saw a Pediatric Neurosurgeon fisrt who passed us off and said was very mild plagio and he didn't suggest banding her. I didn't feel comfortable with that so we went for another opinion to a craniofacial surgeon and he classified her high mild-moderate plagio. Make sure that whichever specialty you choose that you make sure that they work with kids with plagio. We also got opinions from an Orthotist from Cranial Solutions and from Hanger (which is where she will be banded). Good luck with everything and go with your gut. Jen Mom to (almost 7 Mo), tort and plagio, soon to get Hanger Band and (3 years) --- In Plagiocephaly , " k_harris8 " <k_harris8@y...> wrote: > > If I wanted to get a second opinion on whether a band is best for my > son...who whould I see? > > I've seen his pedi (doesn't think the band is needed in this case) > and the pt (who says he is border line on needing it). > > should I see an orthopedic surgen? > neurologist? (doesn't seem right)??? > > thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2007 Report Share Posted April 6, 2007 Hi Bridget, I was dealing with a dysfunctional eustachian tube for more than twenty years. Most GP's, including mine, are more focused on treating symptoms, not cause. Before anyone gets excited about this statement, I said MOST, not ALL. As a result, I was put on antihistimines and decongestants for the last twenty years to combat fluid from building up behind my ear drum. In retrospect, my dysfunctional eustachian tube was most likely caused by my ctoma. If my GP looked into my problem deeper, the ctoma would have been caught a lot sooner, which is why I am so adamant about seeking treatment from an ENT specialist when it come to ANY problems with ears. A specialist is more inclined to seek cause, rather than treat a symptom like a GP. I'm stepping off my soap box now. I'm a little confused about you post. Are you seeking a second opinion about having your ctoma surgically removed, or to confirm you actually have one? Most ctoma are confirmed by CT. If a CT was performed and it shows you have a ctoma, the only way to deal with it is to have it surgically removed. There are no pills and/or non-invasive treatment options to shrink and/or get rid of this hearing eating monster. I can tell you, which you can confirm by reading past posts on this list, the longer you do nothing about it, the bigger it will get and the more damage it will cause. Good Luck Rich > > Hi Everyone, > > My name is Bridget and I'm new to this site. I was diagnosed with C- > tome last October and am now seeking second opinion for my condition. > It started as a defective enstachian tube due to trauma. After so many > times of tube insertion the ear drum finally failed to heal. A > tympanoplasy was done in 1987 leaving thick scar tissue behind the > eardrum with futher hearing loss. It was a vertigo which lasted more > than 2 weeks that brought to the attention of an ENT who diagnosed me > with C-toma and wanted surgery performed. > > I live about an hour drive away from the s Hopkins Hospital, and > would like to find a specialist there for a 2nd opinion. If anyone > knows any info about a great doctor there, please let me know. Thanks > a million! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2007 Report Share Posted April 6, 2007 mcguyver98 <mr@...> wrote: Hi Bridget,I was dealing with a dysfunctional eustachian tube for more thantwenty years. Most GP's, including mine, are more focused on treatingsymptoms, not cause. Before anyone gets excited about this statement,I said MOST, not ALL. As a result, I was put on antihistimines anddecongestants for the last twenty years to combat fluid from buildingup behind my ear drum. In retrospect, my dysfunctional eustachiantube was most likely caused by my ctoma. If my GP looked into myproblem deeper, the ctoma would have been caught a lot sooner, whichis why I am so adamant about seeking treatment from an ENT specialistwhen it come to ANY problems with ears. A specialist is more inclinedto seek cause, rather than treat a symptom like a GP. I'm steppingoff my soap box now.I'm a little confused about you post. Are you seeking a secondopinion about having your ctoma surgically removed, or to confirm youactually have one? Most ctoma are confirmed by CT. If a CT wasperformed and it shows you have a ctoma, the only way to deal with itis to have it surgically removed. There are no pills and/ornon-invasive treatment options to shrink and/or get rid of thishearing eating monster. I can tell you, which you can confirm byreading past posts on this list, the longer you do nothing about it,the bigger it will get and the more damage it will cause.Good LuckRich>> Hi Everyone,> > My name is Bridget and I'm new to this site. I was diagnosed with C-> tome last October and am now seeking second opinion for my condition. > It started as a defective enstachian tube due to trauma. After so many > times of tube insertion the ear drum finally failed to heal. A > tympanoplasy was done in 1987 leaving thick scar tissue behind the > eardrum with futher hearing loss. It was a vertigo which lasted more > than 2 weeks that brought to the attention of an ENT who diagnosed me > with C-toma and wanted surgery performed.> > I live about an hour drive away from the s Hopkins Hospital, and > would like to find a specialist there for a 2nd opinion. If anyone > knows any info about a great doctor there, please let me know. Thanks > a million!> No need to miss a message. Get email on-the-go with for Mobile. Get started. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2007 Report Share Posted April 7, 2007 Bridget,I don't know exactly where you live, but you seem to be in the Baltimore/Wash. area. I just had a c-toma surgery yesterday (need a second one in a couple months). If you want to see another specialist, see Sanjay Prasad in Bethesda (ph: 301-493-9409). He is apparently one of the best around. He's done over 4,000 of these surgeries and never had any complications. Having said that, my dad asked me if I was going to get a second opinion after being diagnosed last week (they got me into surgery fast), and I couldn't see why. The CT scan showed a mass in the ear, Dr. Prasad could tell by looking inside my ear that it was a c-toma, I had conductive hearing loss. No second opinion to be had as far as I could tell. I'd get surgery asap. The risks seem to be minimal, and the longer you wait, the worse your hearing will be. Gosdin <leeece@...> wrote: mcguyver98 <mrbellsouth (DOT) net> wrote: Hi Bridget,I was dealing with a dysfunctional eustachian tube for more thantwenty years. Most GP's, including mine, are more focused on treatingsymptoms, not cause. Before anyone gets excited about this statement,I said MOST, not ALL. As a result, I was put on antihistimines anddecongestants for the last twenty years to combat fluid from buildingup behind my ear drum. In retrospect, my dysfunctional eustachiantube was most likely caused by my ctoma. If my GP looked into myproblem deeper, the ctoma would have been caught a lot sooner, whichis why I am so adamant about seeking treatment from an ENT specialistwhen it come to ANY problems with ears. A specialist is more inclinedto seek cause, rather than treat a symptom like a GP. I'm steppingoff my soap box now.I'm a little confused about you post. Are you seeking a secondopinion about having your ctoma surgically removed, or to confirm youactually have one? Most ctoma are confirmed by CT. If a CT wasperformed and it shows you have a ctoma, the only way to deal with itis to have it surgically removed. There are no pills and/ornon-invasive treatment options to shrink and/or get rid of thishearing eating monster. I can tell you, which you can confirm byreading past posts on this list, the longer you do nothing about it,the bigger it will get and the more damage it will cause.Good LuckRich>> Hi Everyone,> > My name is Bridget and I'm new to this site. I was diagnosed with C-> tome last October and am now seeking second opinion for my condition. > It started as a defective enstachian tube due to trauma. After so many > times of tube insertion the ear drum finally failed to heal. A > tympanoplasy was done in 1987 leaving thick scar tissue behind the > eardrum with futher hearing loss. It was a vertigo which lasted more > than 2 weeks that brought to the attention of an ENT who diagnosed me > with C-toma and wanted surgery performed.> > I live about an hour drive away from the s Hopkins Hospital, and > would like to find a specialist there for a 2nd opinion. If anyone > knows any info about a great doctor there, please let me know. Thanks > a million!> No need to miss a message. Get email on-the-go with for Mobile. Get started. Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2007 Report Share Posted April 7, 2007 Hi Bob, Thanks for the info. I live in Gaithersburg, MD. How did you find out that Dr. Sanjay Prasad is one of the best? Where did he operate you? In his office or at Suburban Hospital? The thing I worry the most is the complications that might occur following the surgery...I had a very bad experience 20 years ago,and that's why I hesitate to have any surgery done unless it's absolutely necessary. Bridget > > > > Hi Everyone, > > > > My name is Bridget and I'm new to this site. I was diagnosed with C- > > tome last October and am now seeking second opinion for my condition. > > It started as a defective enstachian tube due to trauma. After so many > > times of tube insertion the ear drum finally failed to heal. A > > tympanoplasy was done in 1987 leaving thick scar tissue behind the > > eardrum with futher hearing loss. It was a vertigo which lasted more > > than 2 weeks that brought to the attention of an ENT who diagnosed me > > with C-toma and wanted surgery performed. > > > > I live about an hour drive away from the s Hopkins Hospital, and > > would like to find a specialist there for a 2nd opinion. If anyone > > knows any info about a great doctor there, please let me know. Thanks > > a million! > > > > > > > > > --------------------------------- > No need to miss a message. Get email on-the-go > with for Mobile. Get started. > > > > > --------------------------------- > Now that's room service! Choose from over 150,000 hotels > in 45,000 destinations on Travel to find your fit. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2007 Report Share Posted April 7, 2007 Hi Rich, Thanks for your advice! I've been putting this off for long enough, and I must face it now. s Hopkins appointment was hard to get. I heard dr. Lustig's also at s Hopkins Hospital(?). 2 otologists they mentioned on the phone have opening in mid July to see me. That's another 3 months away. I haven't made up my mind yet. I'd like a 2nd opinion, and treatments. CT was done last Oct. I thought I've lived with this condition for almost 40 years, and had such bad experience with tympanoplasty 20 yrs ago(which might have caused the c-toma, I guess), that I could just put it off without doing anything. The ENT who diagnosed me did not explain much to me about my condition...perhaps he wouldn't know the extent until he operates on me? Bridget > > > > Hi Everyone, > > > > My name is Bridget and I'm new to this site. I was diagnosed with C- > > tome last October and am now seeking second opinion for my condition. > > It started as a defective enstachian tube due to trauma. After so many > > times of tube insertion the ear drum finally failed to heal. A > > tympanoplasy was done in 1987 leaving thick scar tissue behind the > > eardrum with futher hearing loss. It was a vertigo which lasted more > > than 2 weeks that brought to the attention of an ENT who diagnosed me > > with C-toma and wanted surgery performed. > > > > I live about an hour drive away from the s Hopkins Hospital, and > > would like to find a specialist there for a 2nd opinion. If anyone > > knows any info about a great doctor there, please let me know. Thanks > > a million! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2007 Report Share Posted April 7, 2007 Bridget,my ENT recommended a few docs, and I ended up with Prasad and have heard (from people at the hospital) that he is one of the best around. I believe he is a professor at town as well. He told me he has done more of these surgeries than anyone in the balt/wash area, over 4,000. He did the surgery at Suburban. I doubt these are ever done anywhere except at a hospital; they are very intricate and involve machinery to monitor your facial nerves to make sure they don't screw those up. I went to my ENT on March 21, Prasad had something open last Monday, and I already had my surgery on Friday, four days after I met the guy, so maybe you will have similar luck re: his availability. I understand your hesitation to have surgery, but from what I've heard the risks involved with this surgery are really small compared to the risk of leaving the ctoma in your ear to wreak havoc on your inner ear. Like I said, Prasad told me he's never had an incident with damaged facial nerves in all the thousands of these he has done, and I think that is the main risk with surgery (well, other than dying on the table, which I'd imagine is about a nil risk). He said he was fairly confident he could get my hearing in the operated ear back to where it was before the surgery (I've had a bit of hearing loss but to be honest, I couldn't really notice it, even after I was told about it). Unfortunately, I need a second operation, but I know I'm in good hands and I am glad to have this thing out of me so quickly. Good luck!Bobbhwang57 <bhwang57@...> wrote: Hi Bob, Thanks for the info. I live in Gaithersburg, MD. How did you find out that Dr. Sanjay Prasad is one of the best? Where did he operate you? In his office or at Suburban Hospital? The thing I worry the most is the complications that might occur following the surgery...I had a very bad experience 20 years ago,and that's why I hesitate to have any surgery done unless it's absolutely necessary. Bridget > > > > Hi Everyone, > > > > My name is Bridget and I'm new to this site. I was diagnosed with C- > > tome last October and am now seeking second opinion for my condition. > > It started as a defective enstachian tube due to trauma. After so many > > times of tube insertion the ear drum finally failed to heal. A > > tympanoplasy was done in 1987 leaving thick scar tissue behind the > > eardrum with futher hearing loss. It was a vertigo which lasted more > > than 2 weeks that brought to the attention of an ENT who diagnosed me > > with C-toma and wanted surgery performed. > > > > I live about an hour drive away from the s Hopkins Hospital, and > > would like to find a specialist there for a 2nd opinion. If anyone > > knows any info about a great doctor there, please let me know. Thanks > > a million! > > > > > > > > > --------------------------------- > No need to miss a message. Get email on-the-go > with for Mobile. Get started. > > > > > --------------------------------- > Now that's room service! Choose from over 150,000 hotels > in 45,000 destinations on Travel to find your fit. > Get your own web address. Have a HUGE year through Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2007 Report Share Posted April 8, 2007 Bob, As a new member, I was really interested in this info. that you provided Bridget. In my introduction post I mentioned that I have been seeing a great Otologist in North Carolina. I have been super pleased with this doc, but I travel over 4 hours to see him. I live in the Winchester area and Fairfax is just a hop skip and a jump away. I went on-line and researched Dr. Prasad's credentials and was extremely impressed! It is great to know that he is so close! Thanks for the info. After I get through this next hump, and my situation stabilizes, I may speak to Dr. McElveen about the possibility of transferring to Dr. Prasad.. As much as I love Dr. McElveen, I'll have to admit the distance between us is the one factor that has made my experience difficult. That trip home after surgery is a killer!. Thanks again. bob pennington <cubiclebang88@...> wrote: Bridget,my ENT recommended a few docs, and I ended up with Prasad and have heard (from people at the hospital) that he is one of the best around. I believe he is a professor at town as well. He told me he has done more of these surgeries than anyone in the balt/wash area, over 4,000. He did the surgery at Suburban. I doubt these are ever done anywhere except at a hospital; they are very intricate and involve machinery to monitor your facial nerves to make sure they don't screw those up. I went to my ENT on March 21, Prasad had something open last Monday, and I already had my surgery on Friday, four days after I met the guy, so maybe you will have similar luck re: his availability. I understand your hesitation to have surgery, but from what I've heard the risks involved with this surgery are really small compared to the risk of leaving the ctoma in your ear to wreak havoc on your inner ear. Like I said, Prasad told me he's never had an incident with damaged facial nerves in all the thousands of these he has done, and I think that is the main risk with surgery (well, other than dying on the table, which I'd imagine is about a nil risk). He said he was fairly confident he could get my hearing in the operated ear back to where it was before the surgery (I've had a bit of hearing loss but to be honest, I couldn't really notice it, even after I was told about it). Unfortunately, I need a second operation, but I know I'm in good hands and I am glad to have this thing out of me so quickly. Good luck!Bobbhwang57 <bhwang57 > wrote: Hi Bob,Thanks for the info. I live in Gaithersburg, MD. How did you find out that Dr. Sanjay Prasad is one of the best? Where did he operate you? In his office or at Suburban Hospital? The thing I worry the most is the complications that might occur following the surgery...I had a very bad experience 20 years ago,and that's why I hesitate to have any surgery done unless it's absolutely necessary.Bridget> >> > Hi Everyone,> > > > My name is Bridget and I'm new to this site. I was diagnosed with C-> > tome last October and am now seeking second opinion for my condition. > > It started as a defective enstachian tube due to trauma. After so many > > times of tube insertion the ear drum finally failed to heal. A > > tympanoplasy was done in 1987 leaving thick scar tissue behind the > > eardrum with futher hearing loss. It was a vertigo which lasted more > > than 2 weeks that brought to the attention of an ENT who diagnosed me > > with C-toma and wanted surgery performed.> > > > I live about an hour drive away from the s Hopkins Hospital, and > > would like to find a specialist there for a 2nd opinion. If anyone > > knows any info about a great doctor there, please let me know. Thanks > > a million!> >> > > > > > > ---------------------------------> No need to miss a message. Get email on-the-go > with for Mobile. Get started.> > > > > ---------------------------------> Now that's room service! Choose from over 150,000 hotels > in 45,000 destinations on Travel to find your fit.> Get your own web address.Have a HUGE year through Small Business. Get your own web address. Have a HUGE year through Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2007 Report Share Posted April 9, 2007 I just had my surgery done this past Friday at s Hopkins in Baltimore MD by Dr. Micheal Holliday. I was referred to him by my local ENT as he has never seen a case like my c-toma. The recovery after post op was grueling cause with the combo of vertigo and the anesthesia, it took me 6 hours. So far so good after only 3 days, but still have the vertigo. I will post a little bio, as I too an new to this group. Nate... > > > > > > Hi Everyone, > > > > > > My name is Bridget and I'm new to this site. I was diagnosed with > C- > > > tome last October and am now seeking second opinion for my > condition. > > > It started as a defective enstachian tube due to trauma. After so > many > > > times of tube insertion the ear drum finally failed to heal. A > > > tympanoplasy was done in 1987 leaving thick scar tissue behind > the > > > eardrum with futher hearing loss. It was a vertigo which lasted > more > > > than 2 weeks that brought to the attention of an ENT who > diagnosed me > > > with C-toma and wanted surgery performed. > > > > > > I live about an hour drive away from the s Hopkins Hospital, > and > > > would like to find a specialist there for a 2nd opinion. If > anyone > > > knows any info about a great doctor there, please let me know. > Thanks > > > a million! > > > > > > > > > > > > > > > > > --------------------------------- > > No need to miss a message. Get email on-the-go > > with for Mobile. Get started. > > > > > > > > > > --------------------------------- > > Now that's room service! Choose from over 150,000 hotels > > in 45,000 destinations on Travel to find your fit. > > > > > > > > --------------------------------- > Get your own web address. > Have a HUGE year through Small Business. > > > > > > > --------------------------------- > Get your own web address. > Have a HUGE year through Small Business. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2007 Report Share Posted August 20, 2007 Hi everyone, I had an appointment with a new doctor for a second opinion about my RA status and diagnosis. He says that he cannot diagnose me with RA, but that he feel confident that I have fibromyalgia. He says that I have fibro because I don't have joint swelling. However, I have joint pain. I'm more confused than ever now. I thought that fibro was where the pain you feel is more muscular, not bones and joints. I really question whether he has it right or not. I just don't know what to think at this point. If anyone here has any thoughts, I'd love to hear them. He gave me a prescription for a muscle relaxant. I don't feel like I need a muscle relaxant. I do have trouble sleeping mostly beause my hips hurt at night. When I told him I had hip pain and that it is in the front, he practically told me that I was wrong and that my pain was elsewhere lower on the thigh. I think he just wanted to prove to me hat I have all the pressure points for fibromyalgia. Thanks for any thoughts you may have. Les Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2007 Report Share Posted August 20, 2007 Hi Les, If it were me, I'd disregard what that doctor said. The Rheumatologist I saw here told me that Fibro is what is diagnosed when they can't find a diagnosis for you. While I know there are pressure points and such that the use to diagnos fibro with, I am still leaning towards RA with you. Joints don't always have to be swollen. I am picky with doctors it seems, but I've just been through the mill it feels like. If they aren't interested in taking care of me and helping me find out what is really wrong and treating it, well then, they don't need my business after all. I once was given muscle relaxants for joint pain too - and they did nothing except make me sleepy - - so be careful if you take them while driving.... I'd keep searching for a doctor who will really listen and take into account your entire being and symptoms. Do take care and I'll keep you in my thoughts and prayers... Rose <leslielick777@...> wrote: Hi everyone, I had an appointment with a new doctor for a second opinion about my RA status and diagnosis. He says that he cannot diagnose me with RA, but that he feel confident that I have fibromyalgia. He says that I have fibro because I don't have joint swelling. However, I have joint pain. I'm more confused than ever now. I thought that fibro was where the pain you feel is more muscular, not bones and joints. I really question whether he has it right or not. I just don't know what to think at this point. If anyone here has any thoughts, I'd love to hear them. He gave me a prescription for a muscle relaxant. I don't feel like I need a muscle relaxant. I do have trouble sleeping mostly beause my hips hurt at night. When I told him I had hip pain and that it is in the front, he practically told me that I was wrong and that my pain was elsewhere lower on the thigh. I think he just wanted to prove to me hat I have all the pressure points for fibromyalgia. Thanks for any thoughts you may have. Les --------------------------------- Looking for a deal? Find great prices on flights and hotels with FareChase. --------------------------------- Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2007 Report Share Posted August 20, 2007 Les, I have no fibro experience. I was diagnose with AS not RA, but I wonder if it's not sero negative RA. I'm on MTX and Remicade. Not getting much relief with the last treatment. So I need to go talk with her about it. I still fight fatigue, daily. My hubby thinks it's time to ask about SSDI. Anyhow..my main pain is in the hips. At time one hip feels like the bone is ramming into the socket. Even when I am doing nothing. I'm back to struggling to get comfortable at night to get to sleep. If I sit too long I have pain, stand too long I have pain. I have pain in my left big toe. Yesterday my wrist pain came back on the left wrist. I don't know of any tradition job I could work without taking breaks to lay down after a few hours. Back to you... I don't like that the doctor is trying to tell you were it hurts, that' not right. You might get a third opinion. Keep us posted! Kate G Hashi's AS At 07:29 AM 8/20/2007, you wrote: >Hi everyone, > >I had an appointment with a new doctor for a second opinion about my >RA status and diagnosis. He says that he cannot diagnose me with RA, >but that he feel confident that I have fibromyalgia. He says that I >have fibro because I don't have joint swelling. However, I have joint >pain. I'm more confused than ever now. I thought that fibro was >where the pain you feel is more muscular, not bones and joints. I >really question whether he has it right or not. I just don't know >what to think at this point. If anyone here has any thoughts, I'd love >to hear them. He gave me a prescription for a muscle relaxant. I >don't feel like I need a muscle relaxant. I do have trouble sleeping >mostly beause my hips hurt at night. When I told him I had hip pain >and that it is in the front, he practically told me that I was wrong >and that my pain was elsewhere lower on the thigh. I think he just >wanted to prove to me hat I have all the pressure points for fibromyalgia. > >Thanks for any thoughts you may have. > >Les > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2007 Report Share Posted August 20, 2007 I think I'd go for a 3rd opinion, Les. Sorry. I know it's frustrating not having a firm diagnosis. Not an MD [ ] 2nd opinion > Hi everyone, > > I had an appointment with a new doctor for a second opinion about my > RA status and diagnosis. He says that he cannot diagnose me with RA, > but that he feel confident that I have fibromyalgia. He says that I > have fibro because I don't have joint swelling. However, I have joint > pain. I'm more confused than ever now. I thought that fibro was > where the pain you feel is more muscular, not bones and joints. I > really question whether he has it right or not. I just don't know > what to think at this point. If anyone here has any thoughts, I'd love > to hear them. He gave me a prescription for a muscle relaxant. I > don't feel like I need a muscle relaxant. I do have trouble sleeping > mostly beause my hips hurt at night. When I told him I had hip pain > and that it is in the front, he practically told me that I was wrong > and that my pain was elsewhere lower on the thigh. I think he just > wanted to prove to me hat I have all the pressure points for fibromyalgia. > > Thanks for any thoughts you may have. > > Les Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2007 Report Share Posted August 20, 2007 --- Hi Rose, It is so comforting to read your post to me. Thank you so much. I do feel like I'm just going around in circles. I saught out a new doctor because I thought I had to have swelling in order to have RA, not because I was unsatisfied with my current doctor. My current doctor is very caring and has great empathy for my health. I wanted the 2nd opinion before beginning any more severe medications that could hurt me if I really don't have RA. I also feel like I have RA over Fibro. I have always felt that fibro is a diagnosis that is used when there are no other answers. Thanks so much for your input and I hope that you are doing well. Les > > Hi Les, > > If it were me, I'd disregard what that doctor said. The Rheumatologist I saw here told me that Fibro is what is diagnosed when they can't find a diagnosis for you. While I know there are pressure points and such that the use to diagnos fibro with, I am still leaning towards RA with you. Joints don't always have to be swollen. > > I am picky with doctors it seems, but I've just been through the mill it feels like. If they aren't interested in taking care of me and helping me find out what is really wrong and treating it, well then, they don't need my business after all. > > I once was given muscle relaxants for joint pain too - and they did nothing except make me sleepy - - so be careful if you take them while driving.... > > I'd keep searching for a doctor who will really listen and take into account your entire being and symptoms. > > Do take care and I'll keep you in my thoughts and prayers... > > Rose > > <leslielick777@...> wrote: Hi everyone, > > I had an appointment with a new doctor for a second opinion about my > RA status and diagnosis. He says that he cannot diagnose me with RA, > but that he feel confident that I have fibromyalgia. He says that I > have fibro because I don't have joint swelling. However, I have joint > pain. I'm more confused than ever now. I thought that fibro was > where the pain you feel is more muscular, not bones and joints. I > really question whether he has it right or not. I just don't know > what to think at this point. If anyone here has any thoughts, I'd love > to hear them. He gave me a prescription for a muscle relaxant. I > don't feel like I need a muscle relaxant. I do have trouble sleeping > mostly beause my hips hurt at night. When I told him I had hip pain > and that it is in the front, he practically told me that I was wrong > and that my pain was elsewhere lower on the thigh. I think he just > wanted to prove to me hat I have all the pressure points for fibromyalgia. > > Thanks for any thoughts you may have. > > Les > > > > > > > --------------------------------- > Looking for a deal? Find great prices on flights and hotels with FareChase. > > --------------------------------- > Boardwalk for $500? In 2007? Ha! > Play Monopoly Here and Now (it's updated for today's economy) at Games. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2007 Report Share Posted August 20, 2007 --- Hi , Thank you so much. I think you have the right idea here. I do have an appointment with a 3rd rheumatologist, but it's not for nearly a month from now. I'll do as I did with this 2nd doctor and that is that I brought my labs from a years worth of data and see what this doctor thinks as well as his exam and hopefully come up with a plan. thanks again, Hope all is well for you. Les > > I think I'd go for a 3rd opinion, Les. > > Sorry. I know it's frustrating not having a firm diagnosis. > > > > Not an MD > > > [ ] 2nd opinion > > > > Hi everyone, > > > > I had an appointment with a new doctor for a second opinion about my > > RA status and diagnosis. He says that he cannot diagnose me with RA, > > but that he feel confident that I have fibromyalgia. He says that I > > have fibro because I don't have joint swelling. However, I have joint > > pain. I'm more confused than ever now. I thought that fibro was > > where the pain you feel is more muscular, not bones and joints. I > > really question whether he has it right or not. I just don't know > > what to think at this point. If anyone here has any thoughts, I'd love > > to hear them. He gave me a prescription for a muscle relaxant. I > > don't feel like I need a muscle relaxant. I do have trouble sleeping > > mostly beause my hips hurt at night. When I told him I had hip pain > > and that it is in the front, he practically told me that I was wrong > > and that my pain was elsewhere lower on the thigh. I think he just > > wanted to prove to me hat I have all the pressure points for fibromyalgia. > > > > Thanks for any thoughts you may have. > > > > Les > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2007 Report Share Posted August 21, 2007 --- HI Kate, I'm so sorry to hear that you are suffering so much. I'm relatively new to all this so can I ask what AS is and Sero Negative RA? I agree with you about disregarding my 2nd opinion doctor. I just do't have respect for him at this point. Besides, he just basically told me that there is no real treatment for fibro other than the muscle relaxant he prescribed for me to take at night so I can sleep. He disregarded the fact that I had to have my wrist fused because I had lost everything that protects the joints. It was bone on bone. I will definitely talk to another so called expert and see what he has to say. For now, I plan to stick with my original doctor and see how that goes. It's really my fault for all this because I was questioning my RA diagnosis because I don't get joint swelling. I do have the other classic RA symptoms though. I wasn't responding to the MTX regimin, and the doctor wanted to put me on orencia, but my wrist fusion interrupted that, and now I'm not currently taking any RA meds. I hope you feel better soon and get on a treatment program that works for you. Take care, Les > Les, > > I have no fibro experience. I was diagnose with AS not RA, but I wonder if > it's not sero negative RA. I'm on MTX and Remicade. Not getting much > relief with the last treatment. So I need to go talk with her about it. I > still fight fatigue, daily. My hubby thinks it's time to ask about > SSDI. Anyhow..my main pain is in the hips. At time one hip feels like the > bone is ramming into the socket. Even when I am doing nothing. I'm back > to struggling to get comfortable at night to get to sleep. If I sit too > long I have pain, stand too long I have pain. I have pain in my left big > toe. Yesterday my wrist pain came back on the left wrist. I don't know of > any tradition job I could work without taking breaks to lay down after a > few hours. Back to you... I don't like that the doctor is trying to tell > you were it hurts, that' not right. You might get a third opinion. > > Keep us posted! > > Kate G > Hashi's > AS > > > > > At 07:29 AM 8/20/2007, you wrote: > >Hi everyone, > > > >I had an appointment with a new doctor for a second opinion about my > >RA status and diagnosis. He says that he cannot diagnose me with RA, > >but that he feel confident that I have fibromyalgia. He says that I > >have fibro because I don't have joint swelling. However, I have joint > >pain. I'm more confused than ever now. I thought that fibro was > >where the pain you feel is more muscular, not bones and joints. I > >really question whether he has it right or not. I just don't know > >what to think at this point. If anyone here has any thoughts, I'd love > >to hear them. He gave me a prescription for a muscle relaxant. I > >don't feel like I need a muscle relaxant. I do have trouble sleeping > >mostly beause my hips hurt at night. When I told him I had hip pain > >and that it is in the front, he practically told me that I was wrong > >and that my pain was elsewhere lower on the thigh. I think he just > >wanted to prove to me hat I have all the pressure points for fibromyalgia. > > > >Thanks for any thoughts you may have. > > > >Les > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2007 Report Share Posted August 21, 2007 > > , > My Rhummy said that I did not fit the mold for RA but he just had a > thought. My blood work was ok but I had the pain he sent me for an MRI of > the hands and when the contrast hit it showed the RA big time. So it could > be a situation such as mine.Worth asking. > Heidi M > > >Hi Heidi, THank you for your thoughts. I had no idea. Thanks. I will ask my doctor about it when I see her next time. I actually have wondered why an MRI hasn't been done yet. But, then I thought well maybe MRI's don't provide the info doctors need to diagnose. Thanks again and I hope you have a great pain free day. LEs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2007 Report Share Posted August 21, 2007 Hi Les, Sero negative RA is no marker in the blood work. AS is Ankylosing Spondylitis, it's another rheumatic disease. Treatment is similar to RA. It's possible that I experiencing less relief from this treatment because I'm stressed out right now. I decided that I would keep a daily log of my symptoms and what I was doing that day. My husband wants me to push for SSDI, but I would need to be able to prove things. So I figure what better way than a log or journal that I can show my doctor. I am sorry your 2nd doctor is a moron. Let us know how your 3rd one goes. Wrist fusion doesn't sound like fun. Hope it all gets sorted out soon for you. Kate G Hashi's AS At 08:26 AM 8/21/2007, you wrote: >--- HI Kate, > >I'm so sorry to hear that you are suffering so much. I'm relatively >new to all this so can I ask what AS is and Sero Negative RA? I agree >with you about disregarding my 2nd opinion doctor. I just do't have >respect for him at this point. Besides, he just basically told me >that there is no real treatment for fibro other than the muscle >relaxant he prescribed for me to take at night so I can sleep. > >He disregarded the fact that I had to have my wrist fused because I >had lost everything that protects the joints. It was bone on bone. > >I will definitely talk to another so called expert and see what he has >to say. For now, I plan to stick with my original doctor and see how >that goes. It's really my fault for all this because I was >questioning my RA diagnosis because I don't get joint swelling. I do >have the other classic RA symptoms though. I wasn't responding to the >MTX regimin, and the doctor wanted to put me on orencia, but my wrist >fusion interrupted that, and now I'm not currently taking any RA meds. > >I hope you feel better soon and get on a treatment program that works >for you. > >Take care, >Les > > > > > Les, > > > > I have no fibro experience. I was diagnose with AS not RA, but I >wonder if > > it's not sero negative RA. I'm on MTX and Remicade. Not getting much > > relief with the last treatment. So I need to go talk with her about >it. I > > still fight fatigue, daily. My hubby thinks it's time to ask about > > SSDI. Anyhow..my main pain is in the hips. At time one hip feels >like the > > bone is ramming into the socket. Even when I am doing nothing. I'm >back > > to struggling to get comfortable at night to get to sleep. If I sit >too > > long I have pain, stand too long I have pain. I have pain in my >left big > > toe. Yesterday my wrist pain came back on the left wrist. I don't >know of > > any tradition job I could work without taking breaks to lay down >after a > > few hours. Back to you... I don't like that the doctor is trying >to tell > > you were it hurts, that' not right. You might get a third opinion. > > > > Keep us posted! > > > > Kate G > > Hashi's > > AS > > > > > > > > > > At 07:29 AM 8/20/2007, you wrote: > > >Hi everyone, > > > > > >I had an appointment with a new doctor for a second opinion about my > > >RA status and diagnosis. He says that he cannot diagnose me with RA, > > >but that he feel confident that I have fibromyalgia. He says that I > > >have fibro because I don't have joint swelling. However, I have joint > > >pain. I'm more confused than ever now. I thought that fibro was > > >where the pain you feel is more muscular, not bones and joints. I > > >really question whether he has it right or not. I just don't know > > >what to think at this point. If anyone here has any thoughts, I'd love > > >to hear them. He gave me a prescription for a muscle relaxant. I > > >don't feel like I need a muscle relaxant. I do have trouble sleeping > > >mostly beause my hips hurt at night. When I told him I had hip pain > > >and that it is in the front, he practically told me that I was wrong > > >and that my pain was elsewhere lower on the thigh. I think he just > > >wanted to prove to me hat I have all the pressure points for >fibromyalgia. > > > > > >Thanks for any thoughts you may have. > > > > > >Les > > > > > > > > > > > > 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.