Question:
My friend is so disgusted. I have posted about her before as I am so worried. Her rheumatologist did one test on her first visit. This second visit he says it did not show she had lupus. I would have thought he would have done a battery of tests. Maybe I’m wrong. She is inflammed. Her entire body is red. She has not been able to work for the past month because of the pain she is in. She has a horrible rash and her ears are breaking out. Her scalp has sores. She has been in the hospital for rib pain which ended up being pleurisy. She has a kidney infection and the dr. didn’t even test her urine. I was hoping he would due blood work thinking she might have anemia but no such luck. I want her to see my rheumy who has lupus herself feeling she will know better how to treat her and what tests to perform. What do you think? Oh, and the one thing he wanted her to do was have an EMG to see if her muscles are damaged. We need help. Thanks. Suzanne
Response:
Hi Suzanne, I think the first thing that needs addressing is her kidney infection. That doesn’t need a specialist necessarily, a urinalysis. No sulfa meds, but this needs to be fixed soon, chronic UTI can lead to kidney damage. After that, might be a good idea to sort out what tests she has had and hasn’t (get copies of the labs etc), then maybe see your rheumy? What test did he do? And what were the results? J – Hide quoted text — Show quoted text -SLong10268 wrote: > My friend is so disgusted. I have posted about her before as I am so worried. > Her rheumatologist did one test on her first visit. This second visit he says > it did not show she had lupus. I would have thought he would have done a > battery of tests. Maybe I’m wrong. She is inflammed. Her entire body is red. > She has not been able to work for the past month because of the pain she is > in. She has a horrible rash and her ears are breaking out. Her scalp has > sores. She has been in the hospital for rib pain which ended up being > pleurisy. She has a kidney infection and the dr. didn’t even test her urine. > I was hoping he would due blood work thinking she might have anemia but no such > luck. I want her to see my rheumy who has lupus herself feeling she will know > better how to treat her and what tests to perform. What do you think? Oh, and > the one thing he wanted her to do was have an EMG to see if her muscles are > damaged. We need help. Thanks. Suzanne
Response:
Hi Suzanne, I don’t blame you for being upset and worried. I don’t think a kidney infection can be left. Her family doctor should handle that right away. I don’t know just what this rheumy is doing. Perhaps he did more than one test, but they only required one vial of blood. It is obvious that something is going on with your friend. It may not be lupus, but it is something. He must be a twit if he doesn’t pursue it, or at least send her on to someone who can. It may involve another specialty. He should refer her, if that is what he thinks. I certainly would think about getting her in to see your rheumy. It doesn’t sound like something that should just be dropped. BJ-wishing you well "SLong10268" <slong10…@aol.com> wrote in message
news:20020221175453.16100.00000094@mb-mq.aol.com… – Hide quoted text — Show quoted text -> My friend is so disgusted. I have posted about her before as I am so worried. > Her rheumatologist did one test on her first visit. This second visit he says > it did not show she had lupus. I would have thought he would have done a > battery of tests. Maybe I’m wrong. She is inflammed. Her entire body is red. > She has not been able to work for the past month because of the pain she is > in. She has a horrible rash and her ears are breaking out. Her scalp has > sores. She has been in the hospital for rib pain which ended up being > pleurisy. She has a kidney infection and the dr. didn’t even test her urine. > I was hoping he would due blood work thinking she might have anemia but no such > luck. I want her to see my rheumy who has lupus herself feeling she will know > better how to treat her and what tests to perform. What do you think? Oh, and > the one thing he wanted her to do was have an EMG to see if her muscles are > damaged. We need help. Thanks. Suzanne
Response:
Suzanne, I think seeing your rheumy is in order here. At least she can address some of the problems your friend is having. Also getting treated for the inflammation is necessary. Did the rheumy do a sed rate at all????? Don’t please go by ANA that sucker can give you worries to know end. It does not mean you do or don’t have lupus if it is positive or negative. It is just a test.. What tests did the doc do to her? EMG, well I have had one. And when my sed rate was sky high and they thought I had some type of muscle damage. It is not the nicest test to undergo but it sometimes needs done. Please have her see another doc. YOU can do that you know. let us know what happens janers
Response:
Thanks so much for trying to help. She had the ANA test which was negative. I think her dr. is solely relying on that test which I have read is not good as her symptoms should be considered too. She said today that she is getting lesions on her arms. Her toes are so swollen they don’t touch the ground. Her wrists are causing her fit. Her hands are swollen too. She doesn’t understand why she is so red, and I mean over her entire body. He did send her to a dermatologist. I read where he can do a skin biopsy to get a dx. Is this right. I also read where drs. do a great disservice to their patients when relying soley on ANA testing. How much of this is true, I don’t know. She did tell the dr. about her kidney symptoms but he didn’t even do a urinalysis. I think my friend needs to get a bit more aggressive regarding what she thinks needs to be done, but she is considering going to my rheumy who I said has lupus herself. I thank you so much for taking your time to write, and I’ll keep you posted. Suzanne
Response:
Thank you so much for posting. Her dr. is a rheumy and I just found out he did the ANA testing which came back negative. Please read my other reply about this. i wish he would consider her symptoms but at least he is sending her to a dermatologist as she is beginning to have lesions on her arms as well as her scalp. Is it uncommon for someone with lupus to be red all over. Is that from inflammation? She’s as red as a beet and stays like that most of the time. She says her toes are so swollen they no longer touch the ground and she is having terrible pain in her wrists and ankles along with everywhere else in her body. Why do drs. not consider symptoms and totally rely on the ANA when I have read it is not unusual for someone with lupus to have a negative result? Well, not all drs., I’m sure. Thanks so much for trying to help. Great people here on this board. Suzanne
Response:
In article <20020221200713.12658.00000…@mb-ba.aol.com>, SLong10268 <slong10…@aol.com> wrote >Thanks so much for trying to help. She had the ANA test which was negative. I >think her dr. is solely relying on that test which I have read is not good as >her symptoms should be considered too. She said today that she is getting >lesions on her arms. Her toes are so swollen they don’t touch the ground. Her >wrists are causing her fit. Her hands are swollen too. She doesn’t understand >why she is so red, and I mean over her entire body. He did send her to a >dermatologist. I read where he can do a skin biopsy
A later thought… have a look into DISCOID lupus. — Andy [Editor, Austrian Philatelic Society] For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps> For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus> For my other interests <URL:http://www.kitzbuhel.demon.co.uk>
Response:
On 22 Feb 2002 02:44:38 GMT, slong10…@aol.com (SLong10268) wrote: >Thanks, Janers. Good advice. The ANA test was the only one performed. After >talking to my friend, her rheumy is testing for polymiositis. I am thinking if >she has this where are the lesions coming from as well as the wrist, rib and >ankle pain. And swollen toes? I bet he will want to do a muscle biopsy next >if he has reason to believe it is the polymiositis. I am hoping she will get a >second opinion before agreeing to that. I’ll keep you posted and thanks ever >so much. Suzanne
you say she is "red all over" – does it look like a bad sunburn? One of my s.g. members has dermatomyositis and lupus (therefore, MCTD) and one of the first symptom that pushed her to see a doctor was this intense redness all over her body. Doesn’t hurt, occasionally itches mildly but it’s just bright red. Dermatomyositis is sort of the "worse" version of polymyositis. But ruling out Lupus based on an ANA is risky at best – careless at least. she will be in my thoughts and prayers, *********************************** KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq30.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’
Response:
Thanks, Janers. Good advice. The ANA test was the only one performed. After talking to my friend, her rheumy is testing for polymiositis. I am thinking if she has this where are the lesions coming from as well as the wrist, rib and ankle pain. And swollen toes? I bet he will want to do a muscle biopsy next if he has reason to believe it is the polymiositis. I am hoping she will get a second opinion before agreeing to that. I’ll keep you posted and thanks ever so much. Suzanne
Response:
She just got out of the hospital for rib pain which ended up being pleurisy. In fact, remembering back, she’s been sick for the past couple of years. She’s been in and out of hospitals for stomach, lung and heart problems. It all adds up to me, but I’m no dr. She will be seeing her primary care physician Monday and said she will go to my rheumy for a second opinion. Thanks for your help. Suzanne
Response:
Hi Suzanne, They can’t rely totally on an ANA. I wonder if your friend should go to the ER. I don’t like the sound of the lesions on her arms, the swollen toes, and the overall redness. Maybe she needs some immediate help. BJ-SK. Canada "SLong10268" <slong10…@aol.com> wrote in message
news:20020221201137.12658.00000118@mb-ba.aol.com… – Hide quoted text — Show quoted text -> Thank you so much for posting. Her dr. is a rheumy and I just found out he did > the ANA testing which came back negative. Please read my other reply about > this. i wish he would consider her symptoms but at least he is sending her to > a dermatologist as she is beginning to have lesions on her arms as well as her > scalp. Is it uncommon for someone with lupus to be red all over. Is that from > inflammation? She’s as red as a beet and stays like that most of the time. > She says her toes are so swollen they no longer touch the ground and she is > having terrible pain in her wrists and ankles along with everywhere else in her > body. Why do drs. not consider symptoms and totally rely on the ANA when I > have read it is not unusual for someone with lupus to have a negative result? > Well, not all drs., I’m sure. Thanks so much for trying to help. Great people > here on this board. Suzanne
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