Guest guest Posted March 18, 2007 Report Share Posted March 18, 2007 Kate; I have been off meds for most of the last few years. I do still flair and swell; I also had the same bone scan as you and showed lots of hot spots mainly in my spin and feet. I did okay with out meds but there are times I could use them .I know a lot of meds can effect you and your blood or at lest they did mine at times. The biggest key for me that they can measure is an elevated feraton iron count. Well good luck to you and it is good you wonder and ask things I wish at first I had Hugs all Marty the redneck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2007 Report Share Posted March 18, 2007 Kate; I have been off meds for most of the last few years. I do still flair and swell; I also had the same bone scan as you and showed lots of hot spots mainly in my spin and feet. I did okay with out meds but there are times I could use them .I know a lot of meds can effect you and your blood or at lest they did mine at times. The biggest key for me that they can measure is an elevated feraton iron count. Well good luck to you and it is good you wonder and ask things I wish at first I had Hugs all Marty the redneck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2007 Report Share Posted March 18, 2007 I am posting this back to the entire group because I think it is a question we all face or will face at one time or another.... The " tests " don't match the pain. I am in a similar situation with my ankle and knee, the x-ray showed no damage, the bone scan came back " normal " .... therefore I am in pain? Well I am.... it hurts with every step I take. The PA at my pain mgmt. clinic keeps telling me that ti is the pain of the disease, not just the damage. She says it's a terrible disease on many levels and prescribes pain meds without question. Pain meds are her specialty it's what she does, why can't my Rheum. or my Primary Doc. think like her and keep looking for a way to " cure " the pain. I don't know.... is it even possible? I just know that I hurt.... and they can't test for that. Sam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2007 Report Share Posted March 18, 2007 I am posting this back to the entire group because I think it is a question we all face or will face at one time or another.... The " tests " don't match the pain. I am in a similar situation with my ankle and knee, the x-ray showed no damage, the bone scan came back " normal " .... therefore I am in pain? Well I am.... it hurts with every step I take. The PA at my pain mgmt. clinic keeps telling me that ti is the pain of the disease, not just the damage. She says it's a terrible disease on many levels and prescribes pain meds without question. Pain meds are her specialty it's what she does, why can't my Rheum. or my Primary Doc. think like her and keep looking for a way to " cure " the pain. I don't know.... is it even possible? I just know that I hurt.... and they can't test for that. Sam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2007 Report Share Posted March 18, 2007 Sam, I've been in the same boat you're in since the beginning for me (mid January '04) with both headaches and body pain. Outside of my headaches the worst was my lower back. The pain became so intense I couldn't stand up or walk, and although the Dr.'s knew there is some damage to my spine, to a few of them the pain and inability to stand didn't match the MRIs & such. I distinctly remember this Korean neurologist I had that tried to " make " me walk.....he had me stand and tried to force me to walk. The pain was so intense I wouldn't let go of the bed rail and he tried to force me to by ripping my arm away from the rail.....he found out the hard way he couldn't lift my (at that time) 235lb body after I fell to the floor. That Dr. had himself convinced the pain wasn't as bad as it was for me, and sadly a bunch of this have dealt with or will deal with someone like this sooner or later. Not long afterwards I found a neurosurgeon who consented I had a severe problem and I had a morphine pump implanted near my stomach with the caththeter going into the base of my spine (no morphine goes into my blood stream) and that has helped immeasurably. My headaches are a lost cause....the Dr's have seen how the debilitate me but after countless tests, MRIs, CT's etc and more damn pills than I ever imagined could possibly exist (over 50 different meds) no answer has been found, but they've been giving me a " little " break lately. Kirk > > I am posting this back to the entire group because I think it is a > question we all face or will face at one time or another.... The > " tests " don't match the pain. I am in a similar situation with my > ankle and knee, the x-ray showed no damage, the bone scan came back > " normal " .... therefore I am in pain? Well I am.... it hurts with > every step I take. The PA at my pain mgmt. clinic keeps telling me > that ti is the pain of the disease, not just the damage. She says > it's a terrible disease on many levels and prescribes pain meds > without question. Pain meds are her specialty it's what she does, why > can't my Rheum. or my Primary Doc. think like her and keep looking > for a way to " cure " the pain. I don't know.... is it even possible? I > just know that I hurt.... and they can't test for that. > Sam > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2007 Report Share Posted March 18, 2007 Sam, I've been in the same boat you're in since the beginning for me (mid January '04) with both headaches and body pain. Outside of my headaches the worst was my lower back. The pain became so intense I couldn't stand up or walk, and although the Dr.'s knew there is some damage to my spine, to a few of them the pain and inability to stand didn't match the MRIs & such. I distinctly remember this Korean neurologist I had that tried to " make " me walk.....he had me stand and tried to force me to walk. The pain was so intense I wouldn't let go of the bed rail and he tried to force me to by ripping my arm away from the rail.....he found out the hard way he couldn't lift my (at that time) 235lb body after I fell to the floor. That Dr. had himself convinced the pain wasn't as bad as it was for me, and sadly a bunch of this have dealt with or will deal with someone like this sooner or later. Not long afterwards I found a neurosurgeon who consented I had a severe problem and I had a morphine pump implanted near my stomach with the caththeter going into the base of my spine (no morphine goes into my blood stream) and that has helped immeasurably. My headaches are a lost cause....the Dr's have seen how the debilitate me but after countless tests, MRIs, CT's etc and more damn pills than I ever imagined could possibly exist (over 50 different meds) no answer has been found, but they've been giving me a " little " break lately. Kirk > > I am posting this back to the entire group because I think it is a > question we all face or will face at one time or another.... The > " tests " don't match the pain. I am in a similar situation with my > ankle and knee, the x-ray showed no damage, the bone scan came back > " normal " .... therefore I am in pain? Well I am.... it hurts with > every step I take. The PA at my pain mgmt. clinic keeps telling me > that ti is the pain of the disease, not just the damage. She says > it's a terrible disease on many levels and prescribes pain meds > without question. Pain meds are her specialty it's what she does, why > can't my Rheum. or my Primary Doc. think like her and keep looking > for a way to " cure " the pain. I don't know.... is it even possible? I > just know that I hurt.... and they can't test for that. > Sam > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2007 Report Share Posted March 18, 2007 Exuse my brain death....... " a bunch of this " should read " a bunch of us " > > Sam, I've been in the same boat you're in since the beginning for me > (mid January '04) with both headaches and body pain. Outside of my headaches > the worst was my lower back. The pain became so intense I couldn't stand up > or walk, and although the Dr.'s knew there is some damage to my spine, to a > few of them the pain and inability to stand didn't match the MRIs & such. I > distinctly remember this Korean neurologist I had that tried to " make " me > walk.....he had me stand and tried to force me to walk. The pain was so > intense I wouldn't let go of the bed rail and he tried to force me to by > ripping my arm away from the rail.....he found out the hard way he couldn't > lift my (at that time) 235lb body after I fell to the floor. > That Dr. had himself convinced the pain wasn't as bad as it was for me, > and sadly a bunch of this have dealt with or will deal with someone like > this sooner or later. Not long afterwards I found a neurosurgeon who > consented I had a severe problem and I had a morphine pump implanted near my > stomach with the caththeter going into the base of my spine (no morphine > goes into my blood stream) and that has helped immeasurably. > My headaches are a lost cause....the Dr's have seen how the debilitate > me but after countless tests, MRIs, CT's etc and more damn pills than I ever > imagined could possibly exist (over 50 different meds) no answer has been > found, but they've been giving me a " little " break lately. > Kirk > > > > > > > I am posting this back to the entire group because I think it is a > > question we all face or will face at one time or another.... The > > " tests " don't match the pain. I am in a similar situation with my > > ankle and knee, the x-ray showed no damage, the bone scan came back > > " normal " .... therefore I am in pain? Well I am.... it hurts with > > every step I take. The PA at my pain mgmt. clinic keeps telling me > > that ti is the pain of the disease, not just the damage. She says > > it's a terrible disease on many levels and prescribes pain meds > > without question. Pain meds are her specialty it's what she does, why > > can't my Rheum. or my Primary Doc. think like her and keep looking > > for a way to " cure " the pain. I don't know.... is it even possible? I > > just know that I hurt.... and they can't test for that. > > Sam > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2007 Report Share Posted March 18, 2007 Exuse my brain death....... " a bunch of this " should read " a bunch of us " > > Sam, I've been in the same boat you're in since the beginning for me > (mid January '04) with both headaches and body pain. Outside of my headaches > the worst was my lower back. The pain became so intense I couldn't stand up > or walk, and although the Dr.'s knew there is some damage to my spine, to a > few of them the pain and inability to stand didn't match the MRIs & such. I > distinctly remember this Korean neurologist I had that tried to " make " me > walk.....he had me stand and tried to force me to walk. The pain was so > intense I wouldn't let go of the bed rail and he tried to force me to by > ripping my arm away from the rail.....he found out the hard way he couldn't > lift my (at that time) 235lb body after I fell to the floor. > That Dr. had himself convinced the pain wasn't as bad as it was for me, > and sadly a bunch of this have dealt with or will deal with someone like > this sooner or later. Not long afterwards I found a neurosurgeon who > consented I had a severe problem and I had a morphine pump implanted near my > stomach with the caththeter going into the base of my spine (no morphine > goes into my blood stream) and that has helped immeasurably. > My headaches are a lost cause....the Dr's have seen how the debilitate > me but after countless tests, MRIs, CT's etc and more damn pills than I ever > imagined could possibly exist (over 50 different meds) no answer has been > found, but they've been giving me a " little " break lately. > Kirk > > > > > > > I am posting this back to the entire group because I think it is a > > question we all face or will face at one time or another.... The > > " tests " don't match the pain. I am in a similar situation with my > > ankle and knee, the x-ray showed no damage, the bone scan came back > > " normal " .... therefore I am in pain? Well I am.... it hurts with > > every step I take. The PA at my pain mgmt. clinic keeps telling me > > that ti is the pain of the disease, not just the damage. She says > > it's a terrible disease on many levels and prescribes pain meds > > without question. Pain meds are her specialty it's what she does, why > > can't my Rheum. or my Primary Doc. think like her and keep looking > > for a way to " cure " the pain. I don't know.... is it even possible? I > > just know that I hurt.... and they can't test for that. > > Sam > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2007 Report Share Posted April 11, 2007 ?What meeting? > > We went to that meeting... it look like my kids were there (f0r awareness) we feel used, I > have a strange feeling about this.. i can't even write about it.. the peoplae that care's showed > some emotion the others i couldnt even see since I was outside waiting in the lines... weird... > I sens my kids to do something i didin't even got to see. > Poor little guys... I am never putting them trough that agai... not worth it...I am sad tonight... > but my boy's did their best.....even so i didin't know what this presentation was about. > the boy's feel proud somehow then they requested mac donalds sooooo why not? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2007 Report Share Posted April 11, 2007 Some meeting with the school board about , I guess Autism awarness. > > > > We went to that meeting... it look like my kids were there (f0r > awareness) we feel used, I > > have a strange feeling about this.. i can't even write about it.. the > peoplae that care's showed > > some emotion the others i couldnt even see since I was outside > waiting in the lines... weird... > > I sens my kids to do something i didin't even got to see. > > Poor little guys... I am never putting them trough that agai... not > worth it...I am sad tonight... > > but my boy's did their best.....even so i didin't know what this > presentation was about. > > the boy's feel proud somehow then they requested mac donalds > sooooo why not? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2008 Report Share Posted June 24, 2008 Ok, I am really confused at this point. As some might remember I wrote a while back about having shortness of breath. I got sick in February and have had really bad shortness of breath since. I had a negative methacholine test, I did have asthma as a child. I had a good pulmonary test. I have been on oral steroids twice since February and z pack antibiotics twice. Now my allergist said I have rhinitis, which I guess he could tell by looking at me. So he wants to put me on more oral steroids and then nasal steroids and he thinks this will help my shortness of breath. I really didn't want to go on oral steroids again, I am on advair or flovant since february anyway. He took a sinus x ray and my regular doctor got a copy and said you have a little something going on the only thing to treat with antibiotics so she said I might want to just leave it alone. My allergist's nurse called and had looked at the same x-ray and said I needed Levoclin which is a three week antibiotic. I asked if he was sure and she said that they can't be sure if it's an infection unless they take a biospy but it looks like it from the xray, then she asked how I was feeling and I said I have been under the weather off and on and short of breath since February. I am so sick of oral steroids especially and also I don't want to take antibiotics if I don't need them, but maybe I should. They said this is a broader antibiotic than the other so maybe it would help? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2008 Report Share Posted June 24, 2008 I have good pulmonary tests, I went to the gym and walked fast, I worked out, when I go I got my lung function back NOW they are good, not my first attack, but I still have asthma, as a matter of fact I probably always did I kept a excel spreadsheet for over 6 years of my odd allergy/sinus issues, because no matter how many antiobiotics I was on it was never fixed something was wrong, shortness of breath is probably a big indicator my doctor started giving me Singular for my so called "sinus problems" I think that it was asthma that played funny tricks, once I started my astham medicine the problems in my head and nose alleviated substantially, I think my runny nose is also a symptom of my asthma, my allergies are just runny nose and itchy eyes, it is always there and I am short of breath. My sinus and allergy reactions aggravate my asthma and cause shortness of breath, I am 34 never had any major problems until I turned 33. Confused Ok, I am really confused at this point. As some might remember I wrote a while back about having shortness of breath. I got sick in February and have had really bad shortness of breath since. I had a negative methacholine test, I did have asthma as a child. I had a good pulmonary test. I have been on oral steroids twice since February and z pack antibiotics twice. Now my allergist said I have rhinitis, which I guess he could tell by looking at me. So he wants to put me on more oral steroids and then nasal steroids and he thinks this will help my shortness of breath. I really didn't want to go on oral steroids again, I am on advair or flovant since february anyway. He took a sinus x ray and my regular doctor got a copy and said you have a little something going on the only thing to treat with antibiotics so she said I might want to just leave it alone. My allergist's nurse called and had looked at the same x-ray and said I needed Levoclin which is a three week antibiotic. I asked if he was sure and she said that they can't be sure if it's an infection unless they take a biospy but it looks like it from the xray, then she asked how I was feeling and I said I have been under the weather off and on and short of breath since February. I am so sick of oral steroids especially and also I don't want to take antibiotics if I don't need them, but maybe I should. They said this is a broader antibiotic than the other so maybe it would help? Quote Link to comment Share on other sites More sharing options...
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