As far as I can tell no way!!!! Im so frustrated. I have one positive ANA and one negative. I meet nearly all 11 criteria for Lupus diagnoses. They have diagnosed me with many many diseases and/or syndromes that go hand in hand with lupus. here r a few: Hypothyroidism, anemia, livido riticularus, Raynaud's phenomenom,fibromyalgia. Extensive nerve damage. This is just a few that I can think of right off. please forgive the spelling! I have two dr that say yes it id lupus then one saying no its just fibro and the symptoms I experience are all from fibro. Ive done pretty extensive reading up on Lupus and fibro also RA. Ive not seen anywhere saying that fibro causes butterfly rashes. sun sensitivity, livido riticularus. Raynaud's, well and there quite a few more. Also I have not seen anywhere in th history of lupus supporting the fact that one negative ANA cancels out a positive when there r almost all criteria involves along with all classic diseases that go hand in hand with lupus or caused by lupus. I just seen another rheumatologist Monday! All she did was a lupus profile work up not even a urine analysis. Something d about living here is when the dr sees that u take a strong pain med they automatically focus on giving u a lecture of why I should not be on these meds. Monday this new rheumy was on the same page as me about the lupus, until she turned the page in my chart an seen my meds, her whole attitude quickly changed. she then did not feel it wss lupus but my pain meds causing all my problems. Even though ive been on the meds for years and years an all this didn't start until last year, it was like a freaking snowball effect with my symptoms. anyhow it doesnt help that im on Medicaid it seems as if they don't even want to mess with u when they see ur on Medicaid. I didn't even get to finish telling this dr Monday my symptoms after she seen the meds im on! Im so frustrated! I think I may have to start going to Houston to find a descent rheumy! Is anybody out there in south Louisiana that knows I good rheumy?
I was chatting with a Rheumatologist recently (not my doctor) and I asked him about the ANA that Rheums want to see positive every single time (mine is usually negative).
He said that once a positive ANA is found and enough other symptoms are present for that ANA to help make the diagnosis, there is no longer any reason to draw serial ANAs. He said it does not indicate disease activity and that it's not uncommon for the ANA to revert to negative, especially with the use of certain meds like steroids and chemo drugs.
My ex-rheum did not share his opinion. I just think it's interesting how they're all in the same field of medicine, all dealing with the same diseases, but all have different opinions.
Sharon
I never have repeat ANAs- what is tested are other markers for disease activity such as sed rate, serum complememnts etc. The ANA can be positive for many other reasons than autoimmune disease just as it can be negative in active disease states. Someone just posted some info on ANA - wonder if I can find it
This isn't what people like to hear, but... put the criteria out of your head. That is not an accepted means for diagnosis and most rheumatologists with shut down when they hear you bring it up. It is a list that was used for a clinical study at one point, and the parameters were broad. Try as we might to get them to do it, no rheumatology association has yet to nail down a specified criteria. They don't want to, because they then lose control of the deciding factors. You'll have to win a diagnosis on the merit of labs, signs, symptoms, and discussion with a rheumatologist that is current and intuitive.. one that is more concerned with listening to you as an individual than with following procedures. Some of them behave like surgeons, unfortunately (that's not a compliment). I'm sorry to say that this is about finding the right rheumatologist.
I've had the same arguements, believe me. I have a diagnosis, but not from my current Drs. My current Drs want to refute the prior diagnosis - an action that I find very offensive in any physician. I don't believe that anyone that has been with you for a small amount of time has the immediate right to foo-foo a prior physicians hard work (and yours) just because they weren't there for it. I can think of no other disease that takes as hard of a beating in this manner. No one says "You didn't really have cancer.. I haven't seen evidence of it myself." They'd likely get poked in the nose for that. We should feel like doing the same. Somehow though, we're expected to just take that kind of insult cooperatively. It is what it is. The bottom line you're after though is appropriate treatment. With or without a diagnosis, get what you need for your conditions. My present physician can't deny my Plaquenil because we have demonstrated evidence that it helps my symptoms - pain, rashes, hand tremor, memory, fatigue, all of it. If they want to dance around and pretend it's something that it's not and call it a "lupus like disease" and UCTD, fine. They look like idiots but I got my meds.
hi jujube I agree with u 100% however my case is way more than just a positive ana an a few symptoms.
Thank u Ann A as always very sweet an kind. However think I finally may have gotten somewhere . The rheumy Monday told me that if I didn't get an appointment r a call then everything was negative an good with the lupus profile. Today I received a letter in the mail for another appointment with them an dermatologist. So im praying treatment is close!!! Its not like im happy about a lupus diagnoses but im happy im a little closer to treatment.
jujube I must apologize to u I was a little aggravated an short with u a while ago on a reply a made to u, as I only seen one of ur posts an seemed rude. however I realize I was wrong and am truly sorry for jumping the gun. I tend to get on the defense at times because some people can be so ugly and rude and cruel. again im so sorry!!!!! Thank u so much for the reply to my discussion and please weigh in on future discussions, as I need all the help I can get from others who have been there and done that. Bless u!!!! please don't think I am a horrible person!!!!
jujubeee said:
I have extensive nerve problems with my lupus too. I get negative ANA's on the titer test and thank goodness have had enough positive ANA's on the direct ANA to keep my rheumies happy. I also have pretty bad livedo reticularis and reynauds and have been on pain meds for years. I was "lucky" in that I also have extreme photosensitivity and have had all sorts of lupus rashes for confirmation of sle as well. (discoid, vascular lesions and rashes, malar, etc) and I took pics of these on my phone and had them ready for my second rheumie. I wasn't letting anything go unnoticed as I fear the same problem you are having now.
I'd like to just say, keep looking until you find the right one. Keep track of all your labs and rashes, take pics and always get a copy of your labs. You MUST ask for the direct ANA Panel. There are people with lupus that slip through the cracks on the titer test. According to my rheumatologist, one of the best in Phoenix, some of us have such a high titer that we are unrecordable on the titer test.
Don't give up. It sounds to me like you are RIGHT and you do have lupus. I don't say that very often. Go to wherever you have to go to get to a good doctor. You can call ahead and talk to a nurse. You can tell them you are interviewing rheumatologists and put the shoe on the other foot so you don't go in having to prove something.
People who don't have answers often change the subject like this last rheumie did to you. Instead of answering how it is you had a positive ANA and now negative and so many of the clinical symptoms recognized by the ACR she changed the subject to your pain control.
You deserve better. I hope you get help soon. What would it really hurt to put you on plaquenil to see if it helps. It's an anti-malarial and won't compromise your immune system. Ask the tough questions.
Love and HUGS, Julie
Right I know redwingfan, its ridicule;ous. I have reasearched a great deal about lupus, fibro, ra, hypothyroidism. And I have not seen anywhere were a negative ana cancels out a positive ana especially when there r so many criteria met. Its ashame . I once heard a dr say THAT PRACTICING MEDICINE IS EXACTLY WHAT IT SOUNDS LIKE, THEY PRACTICE ON PATIENTS AND LEARN FROM THEYRE MISTAKES. SO THEY GO INTO IT NOT REALLY KNOWING WHAT THEY R DOING, ITS NOT UNTIL THEY HAVE *UCKED UP MANY PEOPLES LIVES BEFORE THEY LEARN THE RIGHT WAY. I THINK THAT IS ASHAME, THEY SHOULDNT COME OUT OF SCHOOL UNTIL THEY KNOW THEIR FIELD BACK AND FORTH 100% THIS IS OUR LIVES WE TALKING ABOUT HERE. THAN KS FOR UR REPLY. HOPE TO HEAR FROM U AGAIN!
redwingfan said:
I was chatting with a Rheumatologist recently (not my doctor) and I asked him about the ANA that Rheums want to see positive every single time (mine is usually negative).
He said that once a positive ANA is found and enough other symptoms are present for that ANA to help make the diagnosis, there is no longer any reason to draw serial ANAs. He said it does not indicate disease activity and that it's not uncommon for the ANA to revert to negative, especially with the use of certain meds like steroids and chemo drugs.
My ex-rheum did not share his opinion. I just think it's interesting how they're all in the same field of medicine, all dealing with the same diseases, but all have different opinions.
Sharon
U R ABSO;UTELY RIGHT, POSITIVE ANA CAN BE FOUND IN A VERY LOW % OF HEALTHY PEOPLE. AND IT COULD MEAN SOMETHING OTHER THAN AUTOIMMUNE DISEASE,AGAIN VERY LOW PERCENTAGE. HOWEVER WHEN U HAVE AND MEET NEARLY ALL 11 CRITERIA AND SYMPTOMS WITH A POSITIVE ANA ITS WORTH DIGGING INTO INSTEAD OF SAYING OK ONE POSITIVE ONE NEGATIVE WITH ALL CRITERIA OK WELL U DONT HAVE LUPUS COME BACK IN ONE YEAR. IN MY OPINION THAT IS INCOMPITANT AND DESERVES A MALPRACTICE SUIT! WHAT IS THE HARM IN FURTHER TESTING OR EVEN TRYING THE TREATMENTS VERSES SENDING A VERY GOOD CANDIDATE AWAY AND SOMETHING TERRIBLE END UP HAPPENING ,LIKE THAT PERSON ENDS UP LOSING THIER LIFE FROM NOY GETTING PROPER TREATMENT . THERE R SO MANY HELPFUL AND USEFUL SITES OUT THERE,JUST GOOGLE LUPUS.
poobie said:
I never have repeat ANAs- what is tested are other markers for disease activity such as sed rate, serum complememnts etc. The ANA can be positive for many other reasons than autoimmune disease just as it can be negative in active disease states. Someone just posted some info on ANA - wonder if I can find it
hang in there, i been going back in forward to the Dr. all my life and im 47, i was Dx. 5 years ago and it would take three books to tell you all that i been through. its sad all that we have to go through but dont stop you know your body, & once they tell you whats going its still a gamble cause one Dr. will tell you something and another will say something else. please dont give up. be blessed
LOL UR RIGHT! WHEN I TALK ABOUT CRITERIA IM SPEAKING MORE OR LESS ABOUT SIGNS AN SYMPTOMS! BUT BOTTOM LINE I AGREE WITH U , IT IS WHAT IT IS. I WOULDNT CARE IF THEY WANT TO CALL IT LUPUS R NOT AS LONG AS ONE OF EM WOULD TRY ME ON THE TREATMENTS TO SEE IF THEY WORK. WHICH I FEEL STRONGLY THEY WILL. THIS LAST RHEUMY TRIED TO TELL ME THAT THE FEELINGS IN MY LEGS OF LIKE A BUG CRAWLING OR WATER TRICKLING DOWN MY LEG WAS CAUSED FROM MY PAIN MEDS,LOL!!! SERIOUSLY. iVE DONE HAD SURGERY ON THE NERVES AND DISCS IN MY BACK. I KNKIW ITS NERVE DAMAGE. I BEEN HAVING SPOUTS WERE I CANT CONTROL THE DIRECTION IM WALKING OR SITTING WATCHING TV AN THE ROOM LIKE SPLITS AN SLOWLY MOV3S BACK TOGETHER, SHE SAID THIS TOO WAS CAUSED BY MY PAIN MEDS. GUESS ITS JUST COIENCEDENSE IT DIDNT START UNTIL ALL THIS WITH LUPUS. IVE BEEN ON THSE SAME MEDS SAME QUANITY FOR YEARS AN YEARS AN IT HAS NOT NEVER NOT ONCE DONE THIS. SHE ALSO BLAMED MY FATIGUE ON THEM TOO, ANY ONE WHO HAS TAKEN STRONG PAIN MEDS KNOWS ITS JUST THE OPPOSITE, IT GIVES U ENERGY. ANYHOW THANKS FOR WEIGHING IN ON MY PROBLEM, I APPRECIATE IT GREATLY (:
Tala said:
This isn't what people like to hear, but... put the criteria out of your head. That is not an accepted means for diagnosis and most rheumatologists with shut down when they hear you bring it up. It is a list that was used for a clinical study at one point, and the parameters were broad. Try as we might to get them to do it, no rheumatology association has yet to nail down a specified criteria. They don't want to, because they then lose control of the deciding factors. You'll have to win a diagnosis on the merit of labs, signs, symptoms, and discussion with a rheumatologist that is current and intuitive.. one that is more concerned with listening to you as an individual than with following procedures. Some of them behave like surgeons, unfortunately (that's not a compliment). I'm sorry to say that this is about finding the right rheumatologist.
I've had the same arguements, believe me. I have a diagnosis, but not from my current Drs. My current Drs want to refute the prior diagnosis - an action that I find very offensive in any physician. I don't believe that anyone that has been with you for a small amount of time has the immediate right to foo-foo a prior physicians hard work (and yours) just because they weren't there for it. I can think of no other disease that takes as hard of a beating in this manner. No one says "You didn't really have cancer.. I haven't seen evidence of it myself." They'd likely get poked in the nose for that. We should feel like doing the same. Somehow though, we're expected to just take that kind of insult cooperatively. It is what it is. The bottom line you're after though is appropriate treatment. With or without a diagnosis, get what you need for your conditions. My present physician can't deny my Plaquenil because we have demonstrated evidence that it helps my symptoms - pain, rashes, hand tremor, memory, fatigue, all of it. If they want to dance around and pretend it's something that it's not and call it a "lupus like disease" and UCTD, fine. They look like idiots but I got my meds.
THANK U SO MUCH GODSGIRL66! THERE HAVE BEEN TIMES WERE I FELT LIKE GIVING UP BUT I HAVE MY BABY GIRLS TO LOOK AFTER AN A SICK MOMMY CANT TAKE CARE OF HER BABIES LIKE THEY NEED!!!!
godsgirl66 said:
hang in there, i been going back in forward to the Dr. all my life and im 47, i was Dx. 5 years ago and it would take three books to tell you all that i been through. its sad all that we have to go through but dont stop you know your body, & once they tell you whats going its still a gamble cause one Dr. will tell you something and another will say something else. please dont give up. be blessed
PLEASE DONT WORRY ABOUT IT,IT REALLY IS OK! THANK U FOR THE REASSURANCE THOUGH, I APPRECIATE IT VERY MUCH!! AN NO PLEASE DONT WORRY BOUT TAKING OUT UR REPLY! IF I WOULD HAVE JUST BEEN GOING DOWN IN ORDER I WOULD HAVE SEE UR FIRST REPLY AN THEN I WOULD HAVE REALIZED, BUT I WAS USING LINKS FROM MY EMAIL ACCOUNT AN I DIDNT GO IN ORDER SO I SEEN THE SECOND REPLY FIRST. I THINK WE DO HAVE A LOT IN COMMON THOUGH. IM SURE U FEEL THE CREEPY CRAWLYS IN UR LEGS AN FEET, AS DO I AS ONE OF MANY SYMPTOMS OF EXTENSIVE NERVE DAMAGE. WHEN THIS NEW RHEUMY SEEN MY LIST OF MEDS SHE AUTAMATICALLY STARTED BLAMUNG EVERY ONE OF MY SYMPTOMS ON MY MEDS. EVEN MY FEELINGS OF LIKW WATER TRICKLING DOWN MY LEG OR LIKE A BUG CRAWLING ON ME. I SAID WELL DANG THATS MIGHTY FUNNY MY NEUROSURGEON SEEMS TO BELEIVE ITS FROM MY EXTENSIVE NERVE DAMAGE IN MY BACK AN NECK! SHE ALSO BLAMED THE INCIDENT WERE THE ROOM SPLIT AN THEN WENT BACK TOGETHER AN WHEN I WAS WALIKING TOWARD THE DITCH AN I KEPT TELLING MYSELF TO STRAIGHTEN OUT WERE I WOUILDNT GO IN THE DITCH , ON MY PAIN MEDS AS WELL. LOL ALSO SHE BLAMED MY FATIGUE ON THEM AS WELL. IVE BEEN ON THESE MEDS FOR SO MANY YEARS, THE SAME EXACT AMOUNT EVERY SINGLE DAY, NO LESS AND NO MORE. AND I FEEL THAT ANYONE WHO HAS TO TAKE VERY STRONG PAIN MEDS KNOWS THAT IT IS JUST THE OPPOSITE, IT GIVES U ENERGY, WELL UNLESS U TAKE WAY TO MUCH THEN IF U SIT DOWN U GT TIRED BUT IF U GET UP AN MOVE AROUND U GET LOTS OF ENERGY, AS I SAID BEFORE I NEVER EVER TAKE MORE . SHE DID TELL ME BEFORE I LEFT THAT NO NEWS IS GOOD NEWS,IF I DIDNT RECEIVE A PHONE CALL OR A LETTER THAN IT WAS NEGATIVE. YESTERDAY I RECEIVED A LETTER IN THE MAIL FOR AN APPOINTMENT FOR THE DERMATOLOGIST IN HER CLINIC. IM NOT CLEAR THOUGH ON WHAT IT MEANS. IM NOT SURE IF SHE MAYBE DECIDED AFTER SHE LEFT MY ROOM TO GO AHEAD AN SEND ME TO THE DERMATOLOGIST FOR ALL THE RASHES OR SHE DECIDED WHEN THE RESULTS COME BACK AN WERE NEGATIVE SO SHE DECIDED TO SEND ME AS A BACK UP OR COMFORMATION FOR DIAGNOSES. MY APPOINTMENT ISNT UNTIL THE END OF MARCH, THIS IS GONNA DRIVE ME CRAZY WAITING. WHAT IF I WAIT ALL THAT TIME AN IT WAS JUST A WAIST OF MY TIME, TIME I COULOD HAVE BEEN USING TO GET IN WITH ANOTHER RHEUMY. TIME IS PRECIOUS, MY FAMILY IS SUFFERING WHILE IM LAID UP IN BED! also IM READY TO GET THIS DIAGNOSES BECAUSE IM SCARED MY 5 YEAR OLD DAUGHTER MAY HAVE IT AS WELL. SINCE SHE WAS AROUND TWO SHE HAS HAD A EXTREMELY DARK BUTTERFLY RASH ON HER FACE THAT NEVER GOES AWAY AN NEVER LIGHTENS UP EVEN. AND HERE LATELY SHE HAS BEEN GETTING REALLY STIFF AND SHE CONSTANTLY COMPLAINS OF HER LEGS HURTING HER, EVERY MORNING BEFORE SVCHOOL I HAVE TO PUT HER LAYING ON MY BED AN STRETCH OUT HER LEGS AN ARMS. I HAVE HAS A ANA ON DONE ON HER ITS BEEN A WHILE BACK BEFORE THE MUSCLE ACHES AN JOINT STIFFNSS CAME ABOPUT AN IT WAS NEGATIVE,BUT WE ALL KNOW THAT DOESNT MEAN A THING!!!! THANK U SO MUCH FOR LISTENING
MUCH LOVE AN THANIKS (:
aid:
Oh Monique, I never meant to be rude. I was just repeating what he had to say about dx's. I even said (I think) that I thought you INDEED have lupus. I really didn't mean to say anything rude. Oh gosh, I feel SO BAD now! I reread what I wrote and I realize it could have been misunderstood, and especially when your sensitive about a dx in the first place.
I do feel bad and I'm so sorry Monique. I've been through the ringer as well with my tests and I know how it feels to be undertreated. My last rheumie did not treat me aggressively enough and I ended up with a TIA at the end of June. I had to switch rheumie's and the new one put me on cellcept immediately and it has changed my life.
I wish I could take back my words and reword them. I truly am sorry and I hope you can forgive me. I will be more thoughtful and careful about what I say. I think my rheumatologist was referring to GP's who jump the gun about patients they think might have lupus. We were having a conversation about GP's and the lack of knowledge of most doctors on autoimmune disease. I guess from his perspective he felt way too many women were being sent his way because of the lack of knowledge of the disease.
Mine does ANA's, complement levels, urine (to check my kidneys), sed rate, creatnine clearance, the whole enchilada every 3 months. He uses the labs to just keep a close eye on me. I appreciate it and like him. He's a good match for me. He gives me a summary after every appt and all my labs and spends an hour or so with me every appointment. Best of all he wears a sweet cute little bow tie. lol.
Again, I'm sorry. If it's ok with you I'm thinking of wiping out my response so I don't offend anyone else. I assure you I of all people would never want to hurt anyone dealing with doctors and diagnosis. Ever. I feel your pain. I also thought we had alot in common with our nerve problems.
Much Love and a million "I'm sorry's", Julie
moniquecrader said:jujube I must apologize to u I was a little aggravated an short with u a while ago on a reply a made to u, as I only seen one of ur posts an seemed rude. however I realize I was wrong and am truly sorry for jumping the gun. I tend to get on the defense at times because some people can be so ugly and rude and cruel. again im so sorry!!!!! Thank u so much for the reply to my discussion and please weigh in on future discussions, as I need all the help I can get from others who have been there and done that. Bless u!!!! please don't think I am a horrible person!!!!
jujubeee said:I have extensive nerve problems with my lupus too. I get negative ANA's on the titer test and thank goodness have had enough positive ANA's on the direct ANA to keep my rheumies happy. I also have pretty bad livedo reticularis and reynauds and have been on pain meds for years. I was "lucky" in that I also have extreme photosensitivity and have had all sorts of lupus rashes for confirmation of sle as well. (discoid, vascular lesions and rashes, malar, etc) and I took pics of these on my phone and had them ready for my second rheumie. I wasn't letting anything go unnoticed as I fear the same problem you are having now.
I'd like to just say, keep looking until you find the right one. Keep track of all your labs and rashes, take pics and always get a copy of your labs. You MUST ask for the direct ANA Panel. There are people with lupus that slip through the cracks on the titer test. According to my rheumatologist, one of the best in Phoenix, some of us have such a high titer that we are unrecordable on the titer test.
Don't give up. It sounds to me like you are RIGHT and you do have lupus. I don't say that very often. Go to wherever you have to go to get to a good doctor. You can call ahead and talk to a nurse. You can tell them you are interviewing rheumatologists and put the shoe on the other foot so you don't go in having to prove something.
People who don't have answers often change the subject like this last rheumie did to you. Instead of answering how it is you had a positive ANA and now negative and so many of the clinical symptoms recognized by the ACR she changed the subject to your pain control.
You deserve better. I hope you get help soon. What would it really hurt to put you on plaquenil to see if it helps. It's an anti-malarial and won't compromise your immune system. Ask the tough questions.
Love and HUGS, Julie
It sounds to me like the Dr is assuming you're having some type of withdrawals (re the crawling sensations). He said because of the meds, but was likely unclear on his thoughts. It makes me shake my head, because I know some people get that type of withdrawal but it's not something I ever experienced. I only had pain, phantom pain, muscle cramps, and a horribly upset stomach from any type of withdrawal symptoms. None of which, except the phantom pains, ever motivated me to take more.. and even that was debatable. I sometimes can't tell whether it's real or not, but the only med I've ever had that issue with is Vicodin. Not any other hydrocodone or related formulation either. Norco is stronger but it doesn't do that to me. It does upset my stomach if I've been on it a while and don't taper it off. That's about it.
I know their concerns about pain medication are legit. I just think they're going too far overboard the opposite direction, and unfortunately those of us with real chronic pain are the ones that end up paying the price for the transgressions of the abusers. Don't even get me started on pain management contracts.
I have to say that the pain medications I've taken don't give me energy though. They're sedating types of medication, and I'm particularly sensitive to that variety. If I take the amount most people would, all I do is sleep. That however is not the same thing as fatigue. If the Dr doesn't know the difference between sedation and fatigue... run, don't walk, to someone else. That's pretty basic. The medication(s) you're taking may not be right for you now though. Our chemistry does change, and if it's been years then it may need a reevaluation. You can develop intolerances and allergies at any time to anything. Developing Lupus certainly will do that. Altered perceptions like you describe could be related to the medication with that in mind. It's something to consider. Not ever med works the same for everyone, or forever for the same person. If you have both Lupus and Fibromyalgia, it can be complicated to treat both to get relief. Some Drs feel that they can treat pain from both the same. In my experience, and observation, that is not the case.
moniquecrader said:
LOL UR RIGHT! WHEN I TALK ABOUT CRITERIA IM SPEAKING MORE OR LESS ABOUT SIGNS AN SYMPTOMS! BUT BOTTOM LINE I AGREE WITH U , IT IS WHAT IT IS. I WOULDNT CARE IF THEY WANT TO CALL IT LUPUS R NOT AS LONG AS ONE OF EM WOULD TRY ME ON THE TREATMENTS TO SEE IF THEY WORK. WHICH I FEEL STRONGLY THEY WILL. THIS LAST RHEUMY TRIED TO TELL ME THAT THE FEELINGS IN MY LEGS OF LIKE A BUG CRAWLING OR WATER TRICKLING DOWN MY LEG WAS CAUSED FROM MY PAIN MEDS,LOL!!! SERIOUSLY. iVE DONE HAD SURGERY ON THE NERVES AND DISCS IN MY BACK. I KNKIW ITS NERVE DAMAGE. I BEEN HAVING SPOUTS WERE I CANT CONTROL THE DIRECTION IM WALKING OR SITTING WATCHING TV AN THE ROOM LIKE SPLITS AN SLOWLY MOV3S BACK TOGETHER, SHE SAID THIS TOO WAS CAUSED BY MY PAIN MEDS. GUESS ITS JUST COIENCEDENSE IT DIDNT START UNTIL ALL THIS WITH LUPUS. IVE BEEN ON THSE SAME MEDS SAME QUANITY FOR YEARS AN YEARS AN IT HAS NOT NEVER NOT ONCE DONE THIS. SHE ALSO BLAMED MY FATIGUE ON THEM TOO, ANY ONE WHO HAS TAKEN STRONG PAIN MEDS KNOWS ITS JUST THE OPPOSITE, IT GIVES U ENERGY. ANYHOW THANKS FOR WEIGHING IN ON MY PROBLEM, I APPRECIATE IT GREATLY (:
Sorry to tell you this but a good one is very hard to find! I have SLE Lupus and many other medical issuses due to lupus. There is hope though! I think I finally have doctors that listen and hear me! I also started a binder for me and every time they do labs on me I request a copy and I take thiss binder to every doctors appointment so they can look at my lastest labs. I also have kidney involment with lupus. I have been seeing a kidney specialist sine 2008. I had a stroke in march of 2010! Do not settle for what any doctor says if it does not feel right to you! Keeping searching and you will find one that works! I found mine at KU med! It is a teaching Univeristy! Sorry if I have misspelled words. I have trouble with things since my stroke. Hope you have a great day and good luck!
Tala I was almost done typing out my reply . A very long reply which I put alot of thought into and all the sudden internet explorer stopped responding then it closed the browser an reopened it erasing the whole thing. I was on my last sentence also,lol!!!! im so upset! I will have to redo it later today. Its 3:30 am and its too early to redo it now! I woiuld like to ask u though to go look at a pic of my daughter im bout to post in my pics. Please tell me what u think, her regular dr does not knoiw what it is! And now she is having some interesting symptoms! I feel like far to many times people with lupus will blame lupus for everything but im stumped on this one as well as her pcp dr! would u be so kind as to give me ur advise about what u see? I will explain more once you've seen the pic an hopefully offer ur opinion on it! Thank u so much! I really do appreciate the conversations, opinions and/or advise!
Tala said:
It sounds to me like the Dr is assuming you're having some type of withdrawals (re the crawling sensations). He said because of the meds, but was likely unclear on his thoughts. It makes me shake my head, because I know some people get that type of withdrawal but it's not something I ever experienced. I only had pain, phantom pain, muscle cramps, and a horribly upset stomach from any type of withdrawal symptoms. None of which, except the phantom pains, ever motivated me to take more.. and even that was debatable. I sometimes can't tell whether it's real or not, but the only med I've ever had that issue with is Vicodin. Not any other hydrocodone or related formulation either. Norco is stronger but it doesn't do that to me. It does upset my stomach if I've been on it a while and don't taper it off. That's about it.
I know their concerns about pain medication are legit. I just think they're going too far overboard the opposite direction, and unfortunately those of us with real chronic pain are the ones that end up paying the price for the transgressions of the abusers. Don't even get me started on pain management contracts.
I have to say that the pain medications I've taken don't give me energy though. They're sedating types of medication, and I'm particularly sensitive to that variety. If I take the amount most people would, all I do is sleep. That however is not the same thing as fatigue. If the Dr doesn't know the difference between sedation and fatigue... run, don't walk, to someone else. That's pretty basic. The medication(s) you're taking may not be right for you now though. Our chemistry does change, and if it's been years then it may need a reevaluation. You can develop intolerances and allergies at any time to anything. Developing Lupus certainly will do that. Altered perceptions like you describe could be related to the medication with that in mind. It's something to consider. Not ever med works the same for everyone, or forever for the same person. If you have both Lupus and Fibromyalgia, it can be complicated to treat both to get relief. Some Drs feel that they can treat pain from both the same. In my experience, and observation, that is not the case.
moniquecrader said:LOL UR RIGHT! WHEN I TALK ABOUT CRITERIA IM SPEAKING MORE OR LESS ABOUT SIGNS AN SYMPTOMS! BUT BOTTOM LINE I AGREE WITH U , IT IS WHAT IT IS. I WOULDNT CARE IF THEY WANT TO CALL IT LUPUS R NOT AS LONG AS ONE OF EM WOULD TRY ME ON THE TREATMENTS TO SEE IF THEY WORK. WHICH I FEEL STRONGLY THEY WILL. THIS LAST RHEUMY TRIED TO TELL ME THAT THE FEELINGS IN MY LEGS OF LIKE A BUG CRAWLING OR WATER TRICKLING DOWN MY LEG WAS CAUSED FROM MY PAIN MEDS,LOL!!! SERIOUSLY. iVE DONE HAD SURGERY ON THE NERVES AND DISCS IN MY BACK. I KNKIW ITS NERVE DAMAGE. I BEEN HAVING SPOUTS WERE I CANT CONTROL THE DIRECTION IM WALKING OR SITTING WATCHING TV AN THE ROOM LIKE SPLITS AN SLOWLY MOV3S BACK TOGETHER, SHE SAID THIS TOO WAS CAUSED BY MY PAIN MEDS. GUESS ITS JUST COIENCEDENSE IT DIDNT START UNTIL ALL THIS WITH LUPUS. IVE BEEN ON THSE SAME MEDS SAME QUANITY FOR YEARS AN YEARS AN IT HAS NOT NEVER NOT ONCE DONE THIS. SHE ALSO BLAMED MY FATIGUE ON THEM TOO, ANY ONE WHO HAS TAKEN STRONG PAIN MEDS KNOWS ITS JUST THE OPPOSITE, IT GIVES U ENERGY. ANYHOW THANKS FOR WEIGHING IN ON MY PROBLEM, I APPRECIATE IT GREATLY (:
I love my rheumatoid dr. Eve Scopelitis at Ochsner Clinic main campus on Jefferson Hwy. I was diagnosed with antiphospholipid antibody 26 yrs ago and within the last year diagnosed with Sjogrens. Also had Mitral Valve replacement because of this. Give her a chance. It may take a while for an appt but You should be pleased.
The first time I saw the rheumatologist, he told me that I had the arthritis of someone 20 or 30 years older and there had to be something causing that so he did the ANA and some other blood work. It came back positive (1:160) and he said that it had some of the hallmarks of lupus and RA. He immediately put me on Plaquenil. When he redid the blood work about a year later, the ANA was ok but he said that just showed that the Plaquenil (and doubled arthritis meds) were doing what they were supposed to. I guess my point is that if you have the symptoms of lupus or something that made them run that test, they should not jump all over the place on diagnosis. Is it even possible to get these lovely rashes with other issues?