cynthlily
09-01-2008, 08:01 AM
several months ago i started urinating large amounts o f blood. i was given cipro and told that i had a UTI- when it persisted I saw a Uroloigist an they checked out my bladder (normal) and ran some blood work- my creatinine level was 1.4 and blood sugar 41- I started having really bad fatigue (sleeping 12 hours an never feeling like i had slept) my hair started falling out, i had low grade fevers however the bleeding stopped and the kidney levels improved. i was referred to a Nepholoigst who did some agressive bllo work which turned up a positive and an ANA of 1250- suggesting autoimmune. I started having headaches - It would come in the middle of the night- and I went to see a Rheumatologist in Boston-very isappointing- he didn't even take a medical history- he ran a few tests (he didn't share what they were) an sai they were all negative an that i had myfacial disorder as i had bad pain in my right buttock which sudenly switched to my sternum (costochondritis) - this has been happening now for 3 weeks- i am at my wits end (as is my primary care dr) i am in excrutiating pain 24/7. also, i have really bad palpitations which i have had since this past nov when i had a TIA. anyone out there with similar symptoms??
Sponsor
Paddy55
09-01-2008, 10:43 AM
Cinthlilly - so sorry to hear of your troubles. Have you been diagnosed with fibromyalgia? Maybe you are in the midst of trying to find that out, right?
Anyway, the high ANA may indicate auto-immune, but I think further detail testing can identify exactly what antibodies are elevated. Could you get a copy of the tests from the rheumie you saw? He didn't even take your history! You're right - very dumb! :(
The blood in urine - definitely not a symptom of fibro. Headaches and costo - yes. I think it's time for a new rheumie, a thorough history and blood work. Hopefully the rheumie will slow down, start from scratch. Meantime, if you can, I would suggest succumbing to the fatigue, rest, ask for a prescription for pain and inflammation in the interim while getting to see a new rheumie.
If you haven't already done it - Only other thing I can suggest is posting your question on the Arthritis site, maybe someone with other autoimmune issues will identify with your symptoms?
Wishing you peace and comfort,
Paddy
Anyway, the high ANA may indicate auto-immune, but I think further detail testing can identify exactly what antibodies are elevated. Could you get a copy of the tests from the rheumie you saw? He didn't even take your history! You're right - very dumb! :(
The blood in urine - definitely not a symptom of fibro. Headaches and costo - yes. I think it's time for a new rheumie, a thorough history and blood work. Hopefully the rheumie will slow down, start from scratch. Meantime, if you can, I would suggest succumbing to the fatigue, rest, ask for a prescription for pain and inflammation in the interim while getting to see a new rheumie.
If you haven't already done it - Only other thing I can suggest is posting your question on the Arthritis site, maybe someone with other autoimmune issues will identify with your symptoms?
Wishing you peace and comfort,
Paddy
cynthlily
09-01-2008, 11:50 AM
thanks so much for responding. i was diagnosed with myfacial pain syndrome-of course when i looked it up fibro came up. i am on pain meds right now but into week 3 of costachondiritis-can't sleep on my side- basically have to sleep standing up. my primary says she won't diagnose me with fibro cause its not a diagnosis- will see new rheumy next week
seaturtle
09-01-2008, 10:47 PM
Hello,
Ouch, I'm so sorry you're in such pain.
Indeed time to get new rheumy. We don't need to be told that fibro is not a diagnosis.
If they had it, they're for sure diagnose it
I am most concerned about the blood in the urine. Did they give you an answer on that one? If not, go to someone else. And do you have pain killers for the costochondritis? There's no reason you have to go on in that severe pain.
It sounds to me as if you need a team of good doctors, and I am infuriated at the treatment you're (not) receiving.
Please keep us posted. I will send healing thoughts your way.
Seaturtle
Ouch, I'm so sorry you're in such pain.
Indeed time to get new rheumy. We don't need to be told that fibro is not a diagnosis.
If they had it, they're for sure diagnose it
I am most concerned about the blood in the urine. Did they give you an answer on that one? If not, go to someone else. And do you have pain killers for the costochondritis? There's no reason you have to go on in that severe pain.
It sounds to me as if you need a team of good doctors, and I am infuriated at the treatment you're (not) receiving.
Please keep us posted. I will send healing thoughts your way.
Seaturtle
sweetjerseygirl
09-02-2008, 12:04 AM
Hi, i just wanted to tell you im sorry for you also. Dont give uo, it took me years of taking every test on the planet ! The doctor always scrating his head, treated me for this and that ! you could imagine how frustrating that was.
My knee's went out on me and i do have R/A, usually its only one but when they both went he gave me a shot in both knee's and said i want you to see the Rhumatolgist. So i agreed and when i went to him he extracted fluid from the knees :( .
Next time around he told me i had fibromyalgia, i didnt believe it, i kept saying "the really weird thing is i heard almost everyone in the office talking about it " and how much he had helped them, and most were claiming they were starting to feeling better. I kept saying there's no way that everybody in this office has the same thing, no way !
The last time i went to see him, he was mad at me because he wanted me to call this 800 number or go to a site he recommended. He said you didnt look at the site i asked you to look at ? I said no i didnt and the meds you have me on arent doing anything. It took a whole year before i was convinced with no help from my rhummy because he wouldnt explain certain things to me, he would just say go to the site i told you too. Made me so mad :mad: now if he would have explained things to me in person, even a little i would have taken it more seriously...when i started to do research, it was like the brick fell on my head, most everything i had been complaining about for the last ten years were staring me in the face, it was like putting this big puzzle together ! I was gald to finally have an answer but angry about all i had been though and if he only would have taken some extra time to say why he thought so and this & that , i would have be looking a little harder but i never had a doctor do that to me before ! Hey even doctors should recognize when their patients are stubborn ;) and i was defiant ! Like a child :confused: ok i admit it !
Now i have taken control of the situation right down to the meds, i would hate to see you what i put my own self through. Of course trama and stress plays a big part...I herniated a disc and didnt know it, i'v had four surgerys for different things ! I guess my regular doctor kept trying to tie all i had been through to my pain but i found out differently now.
It is difficult because some medical folks dont believe in this condition, so instead of wasting your money, find a doc that treats it. Ask that question before you go in for a visit. I'v had like a hundred different symphoms of fibro and my regular doctor never caught on. Iv been sent to an oncologist, infection specialist, nuero doc, you name it, iv been to em, funny thing is when the right doctor made the right call, i wouldnt believe him, how ironic is that ?
You take care of yourself for now as much as you can, your definatly at the right spot as others have nightmarish stories ! so hollar away, ask for help, just complain if need be or vent. It can take over your life, if you let it and thats no joke. There are days when you just cant do anything but hurt and thats what we are all here for, the frustrating parts amoung the other things i have mentioned, i always say everyone is alike but different. Fibro is a strange condition and affect everybody in different ways. Even though its painful, try to beat it at its own game if possible. Good luck, i hope you find the right doctor and get on the right meds. Sometimes that takes awhile to figure out which ones are best for you but knowledge is the key also. Most people are on muscle relaxers, a pain reliever, an anti-depressant and something to help them fall asleep. Hope u get to feeling better soon :angel:
My knee's went out on me and i do have R/A, usually its only one but when they both went he gave me a shot in both knee's and said i want you to see the Rhumatolgist. So i agreed and when i went to him he extracted fluid from the knees :( .
Next time around he told me i had fibromyalgia, i didnt believe it, i kept saying "the really weird thing is i heard almost everyone in the office talking about it " and how much he had helped them, and most were claiming they were starting to feeling better. I kept saying there's no way that everybody in this office has the same thing, no way !
The last time i went to see him, he was mad at me because he wanted me to call this 800 number or go to a site he recommended. He said you didnt look at the site i asked you to look at ? I said no i didnt and the meds you have me on arent doing anything. It took a whole year before i was convinced with no help from my rhummy because he wouldnt explain certain things to me, he would just say go to the site i told you too. Made me so mad :mad: now if he would have explained things to me in person, even a little i would have taken it more seriously...when i started to do research, it was like the brick fell on my head, most everything i had been complaining about for the last ten years were staring me in the face, it was like putting this big puzzle together ! I was gald to finally have an answer but angry about all i had been though and if he only would have taken some extra time to say why he thought so and this & that , i would have be looking a little harder but i never had a doctor do that to me before ! Hey even doctors should recognize when their patients are stubborn ;) and i was defiant ! Like a child :confused: ok i admit it !
Now i have taken control of the situation right down to the meds, i would hate to see you what i put my own self through. Of course trama and stress plays a big part...I herniated a disc and didnt know it, i'v had four surgerys for different things ! I guess my regular doctor kept trying to tie all i had been through to my pain but i found out differently now.
It is difficult because some medical folks dont believe in this condition, so instead of wasting your money, find a doc that treats it. Ask that question before you go in for a visit. I'v had like a hundred different symphoms of fibro and my regular doctor never caught on. Iv been sent to an oncologist, infection specialist, nuero doc, you name it, iv been to em, funny thing is when the right doctor made the right call, i wouldnt believe him, how ironic is that ?
You take care of yourself for now as much as you can, your definatly at the right spot as others have nightmarish stories ! so hollar away, ask for help, just complain if need be or vent. It can take over your life, if you let it and thats no joke. There are days when you just cant do anything but hurt and thats what we are all here for, the frustrating parts amoung the other things i have mentioned, i always say everyone is alike but different. Fibro is a strange condition and affect everybody in different ways. Even though its painful, try to beat it at its own game if possible. Good luck, i hope you find the right doctor and get on the right meds. Sometimes that takes awhile to figure out which ones are best for you but knowledge is the key also. Most people are on muscle relaxers, a pain reliever, an anti-depressant and something to help them fall asleep. Hope u get to feeling better soon :angel:
cynthlily
09-02-2008, 07:05 AM
thank you for replying. i am so stressed and am nervous about my doctor signing the paperwork for short term disability for me- i am NOT able to work right now-i can barely shuffle from room to room. i am taking vicoin for the chostachondritis pain but it is doing nothing but making me feel crappy- the only thing that seems to work is moist heat. i have found some guy online that is in delray that is a specialist in fibro-if this rheumy my dr is sending me to sucks (as most of them do) i will try him
cynthlily
09-02-2008, 09:51 AM
no explanation for the blood in the urine-at the time they couldn't use dye to look at my kidney function cause they were afraid they would shut down- saw a nephologist-she theorized that it was a kidney stone. i told her that was bull___! i have passed many stones and never seen a drop of blood in my urine. i am stymied as is my GP- i think she's starting to think i am crazy. i have been on beta blockers for 3 years an i am now weaning off of them- i never had a [palpitation until i started with the metropolyl- this is all so confusing. strange tests results and then they are normal. this costachondritis just gets worse and worse- now my lower back hurts- not sure if i am compensating cause of the pain in the neck and chest or if its something else.