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Old 03-06-2011, 09:31 PM   #1
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What to expect at next rheumatologist appointment.

I have been sick for over 4 months. It started as a fever and cough that wouldn't go away. They did chest x-rays and a CT scan and couldn't figure it out. They decided it was a virus that my body just couldn't fight. Then when I finally started feeling better, I went outside for a walk. The next day I felt badly again and developed a scaly red rash across my forehead and down the side of my face. My the palms of my hands and my fingers started turning deep red. Then the scaly rash went away and my cheeks turned bright red and looks a little like rocacea.

During all of this time I have constantly run a low grade fever. Most of the time it's between 99.5 and 100 but does shoot up periodically to over 101. I was able to get in to a rheumatologist and was fortunately able to show him the red flushing on my hands, I had a low grade fever and redness on my cheeks and nose. He ran blood tests and they called last week to say that nothing terribly concerning, some blood in my urine so they want me to come back in 6 weeks.

Last spring my ears started turning red and then would spread to the top of my head and down my whole body. It looked like I had a sun burn and lasted for about 1/2 hour. My doctor at the time thought it was a result of anxiety.

Over the summer we went to the beach for a week and I could barely function. I was exhausted after the 2nd day and spent the rest of the week barely going through the motions. I was exhausted and couldn't think straight.

Some of these seem to be tied to times when I get my period. Like at the beach ... but they also seem to be tied to times when I've been outside a lot. I frequently get light headed and dizzy, sometimes while I'm driving! This past weekend I got my period on Saturday. On Friday night I slept 14 hours and could barely get out of bed when I did wake up. On Saturday night I slept 12 hours and it took all of my extra energy to do a couple of loads of laundry.

My doctor mentioned lupus so I'm posting this here. I don't understand why they want me to wait 6 weeks to come back? Does any of this sound like lupus? If so, what should I expect at my next appointment?

This is making me crazy, a lot of my friends have 'dropped me' because they think I'm crazy. I'm a single mom and I feel terrible what this is doing to my kids. They're starting to think I'm crazy too.

 
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Old 03-07-2011, 06:34 AM   #2
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Re: What to expect at next rheumatologist appointment.

I am going through the same thing minus the rash. One of my sisters wont even talk to me because of the depression, ect.You can look at my messages and I have listed everything that the Dr. drew on me 2 weeks ago. It will take a month to get all of my tests results back. I have had severe fatigue, depression, blind in 1 eye and a Pos. ANA of 1:320 and have arthritis everywhere.

Hang in there and keep on the Dr. to check you for Lupus.

Amanda

 
Old 03-07-2011, 07:24 AM   #3
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Re: What to expect at next rheumatologist appointment.

You need to go see a urogynecologist over the blood in your urine, and the problems with your periods.

Heat will exhaust you, it causes me fatigue, migraines, and nausea, always has since I was a kid. My mom never believed in air conditioning so I did some suffering growing up with that.

 
Old 03-07-2011, 07:27 AM   #4
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Re: What to expect at next rheumatologist appointment.

Quote:
Originally Posted by Ladygolfer View Post
I am going through the same thing minus the rash. One of my sisters wont even talk to me because of the depression, ect.You can look at my messages and I have listed everything that the Dr. drew on me 2 weeks ago. It will take a month to get all of my tests results back. I have had severe fatigue, depression, blind in 1 eye and a Pos. ANA of 1:320 and have arthritis everywhere.

Hang in there and keep on the Dr. to check you for Lupus.

Amanda
Ladygolfer, I am sorry your sister treats you like that. No one really wants to talk to me when I'm like that either. I guess it just stresses them out and brings them down too. Your best bet with that is to find a psychologist, they will always be understanding, and give a good shoulder to cry on. Family should be that way, but 99% of the time, that isn't going to happen. I even get treated bad when my pain is really bad, or for laying in bed when I'm really tired, I fight it now, but you wouldn't believe the stuff I have been put through over being sick. Just wanted you to know, your not alone in that.

 
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Old 03-07-2011, 07:36 AM   #5
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Re: What to expect at next rheumatologist appointment.

They've tested me for lupus and said they'd go over everything in 6 weeks? That's what I don't understand. Why wait 6 weeks? Is it to run more tests?

I'm sorry you're going through this too. It's not fun and very lonely. I got divorced a couple of years ago and have full custody of my kids. My Dad lives with us thankfully, he is a big help but I feel like a hypochondriac. I also have a great job. They have been so understanding and let me work from home whenever I need to...which of course makes mre feel guilty like I'm taking advantage.

 
Old 03-07-2011, 07:39 AM   #6
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Re: What to expect at next rheumatologist appointment.

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Originally Posted by neveragain444 View Post
You need to go see a urogynecologist over the blood in your urine, and the problems with your periods.

Heat will exhaust you, it causes me fatigue, migraines, and nausea, always has since I was a kid. My mom never believed in air conditioning so I did some suffering growing up with that.
Is a urogynecologist someone that my rheumatologist will refer me to or do I have to wait for a diagnosis? My general practitioner diagnosed me with PMDD last fall and put me on prozac. But that only helps a little and not all of the time. It does nothing for the fatigue, just makes me feel slightly less crazy.

 
Old 03-07-2011, 08:46 AM   #7
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Re: What to expect at next rheumatologist appointment.

Feelingcrazy, I sense doctors sometimes want multiple positive results before saying very much. Maybe because autoimmune tests are difficult to perform & often yield false positives? Or they want to see if your values worsen over a few weeks? Or some of your slower tests haven't even come back yet because they take awhile to perform? Maybe because certain diagnostic standards call for multiple positives? (I've read criteria that specify multiple occurrrences are required for certain things in certain diseases.)

Another thought. How long do your rashes last? Are any on body areas you wouldn't mind having biopsied? (Will leave small scar.) I ask because dermatologists (or dermatapathologists) can perform biopsy plus immunofluoresecent stain tests, and this procedure CAN be another pathway to a lupus diagnosis, if needed (meaning, if the criteria you fulfill, incl. blood results, haven't proven the case either way).

Re: blood in urine. Did you ask how dr. was sure it ISN'T a urinary tract infection? (I imagine they can tell the difference between blood in urine from infection vs. from some other cause---but I don't know HOW.)

Re: your friends avoiding you. I got that, too. But having had years to reflect, I now suspect mine were doing that all-too-human thing, where people avoid people who are having troubles, lest it rub off. My husband once avoided visiting me when I was hospitalized for some days, and my office overnighted a huge carton of work to my hospital room; and I didn't know whether to laugh or cry. My advice is, try not to judge just yet. Give them and yourself some time. Let us know how you're faring. Sending best wishes, sympathetically, Vee

P.S. Forgot to ask if you'd reviewed side effects for all Rx'es & OTC's you're taking. Especially Prozac, because you're relatively new to it, PLUS I just saw some interesting things in its drug info!

Last edited by VeeJ; 03-07-2011 at 09:22 AM. Reason: added PS

 
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Old 03-07-2011, 09:14 AM   #8
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Re: What to expect at next rheumatologist appointment.

It is taking my blood tests a month to all come back. Maybe that is the reason. Yes, you need to check soon and see why you have blood in your urine!!!

Amanda

 
Old 03-07-2011, 09:23 AM   #9
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Re: What to expect at next rheumatologist appointment.

Thanks Neveragain for your posts and support. Last summer, I could not tolerate the heat and did not play golf all summer. My sister told my other sister that I was always worried about my health, depressed and no fun anymore!! I can not even tolerate someone's story that goes on and on. I was trying to think of the tern Short attentions span and the Rheumie said "Impatience" and then she said I am just kidding. I really like her alot. You know that APS could explain my sister has gone blind in both eyes and why I have gone blind in 1 eye, but I will just have to see what she says. My luck everything will be neg and I will remain a mystery!!

 
Old 03-07-2011, 09:49 AM   #10
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Re: What to expect at next rheumatologist appointment.

Ladygolfer & Feelingcrazy, with my last (final) specialist, he allowed a full month for labs and biopsies to come back. I especially wonder how long those ANA "cascade" tests take? I think they're done in stages, e.g., if stage 1 is positive, then stage 2 is done---maybe followed by even more stages (dunno)?

Also, envision how an aberrant immune system behaves. It's aberrant for awhile (maybe weeks), then OK for awhile, then off again, etc. So timing of blood draw is critical, because drs. have to catch those nasty autoantibodies before they recede temporarily. (How different from things like high blood sugar, high cholesterol, etc.!) Anyway, I'm very glad you both found us for company as you ride out the storm. I had no support group when I was in limbo (plus I was incredibly clueless ). That felt awful, which is why I post here. Thinking of you both & sending hugs, Vee

 
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Old 03-07-2011, 11:17 AM   #11
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Re: What to expect at next rheumatologist appointment.

My rash seems not to go away at all. The scaly one that was originally on my face went away after about a week. My red cheeks seem to be here to stay but are sometimes worse than others.

I don't go back to the rheumatologist until the end of March but now am more worried they won't find anything than of what they'll find. For some reason being able to put a label on my craziness with make me less doubtful of myself? I'm not sure, all I know is that I seem to get worse after being in the sun; feel exhausted most of the time but worse right before my period; and really have no patience for anyone...am anxious all of the time and am having a terrible time concentrating on anything. I used to read all of the time, now I can bare get past a page before my mind wanders. I feel like I do when my thyroid is off (I'm hypothyroid) but they've checked my thyroid levels and they're within normal ranges....

 
Old 03-07-2011, 07:36 PM   #12
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Re: What to expect at next rheumatologist appointment.

You should not need a referral to go to a gynecologist, or a urogynecologist, you can have your rhematologist refer you, but just look in your phone book, and find one nearby, and ask them if they take your insurance, if they need a referral, and if you can get an appt. I am pretty positive you won't need one. You need the urogynecologist because they can look at other issues like your bladder and such, and a gyn mainly focuses on female organs.

How they figure if it's not an infection is by doing a urinalysis and urine culture. A gyn can do a pelvic exam and check for other types of infections. You need a urogynecologist or urologist to look for bladder or kidney issues causing the problem. Need to #1 make sure it's not cancer, likely not, but it needs to be ruled out. I have interstitial cystitis, chronic bladder inflammation, I get blood in my urine from time to time. I don't have my uterus anymore and I know it's not normal. Since you do, it's possible you could get bleeding between periods. But it would probably benefit you to let a urogyn check things out.

You might also ask your doctor about a low dose of adderall (ADHD medication) to help you concentrate and focus better. It'll do the trick. Might help your fatigue some too.

The ANA test even with the autoantibodies being checked only takes a few days to get results on, a week at most. In a doctor's office setting, it might take them a week or two. It's slower for some reason. I have had my ANA checked through a lab here and I know it doesn't take very long. You might want to call them if you don't want to wait 6 weeks, and see how your tests turned out. The reason for the wait, is probably because the rhematologist is backed up with patients and appts.

 
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Old 03-07-2011, 07:58 PM   #13
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Re: What to expect at next rheumatologist appointment.

Quote:
Originally Posted by Ladygolfer View Post
Thanks Neveragain for your posts and support. Last summer, I could not tolerate the heat and did not play golf all summer. My sister told my other sister that I was always worried about my health, depressed and no fun anymore!! I can not even tolerate someone's story that goes on and on. I was trying to think of the tern Short attentions span and the Rheumie said "Impatience" and then she said I am just kidding. I really like her alot. You know that APS could explain my sister has gone blind in both eyes and why I have gone blind in 1 eye, but I will just have to see what she says. My luck everything will be neg and I will remain a mystery!!
I was so consumed with my health, that I pretty much stopped living my life, so you can say I lost 14 years, and my younger years at that. I'm so tired, all I wanted to do was stay in bed. Wished it all would just end. I wouldn't even take care of myself on a personal level. Depressed, no doubt. Just recently, I told myself no more. I am going to do what I can to get better and stop all this nonsense. Since I have been fighting my fatigue now, I go on and try to do things I need to do and live a partial normal life, which in turn, I have lost most of the depression I was feeling, and it was really bad. My daughter feels alot better now that mommy is cheered up and not staying in bed all of the time. She's resented me so bad for being sick, my son grew up doing the same thing. I cannot understand how you cannot be compassionate to someone who has a chronic illness, but my family is far from that way. I guess it takes someone being in your shoes to really realize what your going through. Your sister is old enough to not be acting that way, I'm sure, but I know where my kids are concerned, they really got tired of hearing about it all the time. I just have to step back, not talk about it, and try to act like things are okay the best I can. I don't want to burden them with this anymore than I already have. And you don't want to talk about your health problems with someone that all they are capable of doing is running their mouth about it, you have us to talk to if they don't want to here it, and I am sorry. I know what that feels like oh too well.

Have you seen an eye doctor over the blindness? If not, you really should. I would not worry nothing is going to show up, you've already had a high positive ANA at 1:320. That is what mine started at when I started getting severe fatigue. It was just last year before I found out my RNP was sky high too. I felt like it was a mystery for all those years. Fibromyalgia and CFS wasn't quite enough for me to explain my symptoms. I needed something rock solid and I know now it's MCTD but it sure did take long enough to find that out for sure. It sucks getting an autoimmune disease diagnosed. If your tests keep coming back positive high, I can guarantee you, that you have it. I guess whether anything else shows up depends on how bad you have it. I had nothing else show up until last year. And I mean nothing.

 
Old 03-07-2011, 08:45 PM   #14
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Re: What to expect at next rheumatologist appointment.

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Originally Posted by VeeJ View Post
Ladygolfer & Feelingcrazy, with my last (final) specialist, he allowed a full month for labs and biopsies to come back. I especially wonder how long those ANA "cascade" tests take? I think they're done in stages, e.g., if stage 1 is positive, then stage 2 is done---maybe followed by even more stages (dunno)?

Also, envision how an aberrant immune system behaves. It's aberrant for awhile (maybe weeks), then OK for awhile, then off again, etc. So timing of blood draw is critical, because drs. have to catch those nasty autoantibodies before they recede temporarily. (How different from things like high blood sugar, high cholesterol, etc.!) Anyway, I'm very glad you both found us for company as you ride out the storm. I had no support group when I was in limbo (plus I was incredibly clueless ). That felt awful, which is why I post here. Thinking of you both & sending hugs, Vee
I'm like opposite with that. My ana stayed high 1:320 always, and now 1:640. My RNP did not show up until last year, and it has been checked multiple times, it went down with antimalarials but did not by any chance recede or go anywhere near normal. I am also always sick. I know what flares are (god help us all) but I always feel pretty nasty with or without them.

 
Old 03-08-2011, 06:29 PM   #15
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Re: What to expect at next rheumatologist appointment.

Hi there Never-

Thanks you for your kind words. When I went blind in my Rt. eye 10 years ago, they workd me up for MS and nothing. My Opthmalogist said that I ever had MS, Lupus or a brain tumor and the only thing that came back positive was the ANA and NOONE followed up on that and I had a team of Drs. Opthmal, Neuroopthmalagist, a Neurologist. After I had massive amounts of solumedrol I asked my Neurologist when I would get my vision back and he said I dont have a crystal ball, so I dont know. What a jerk.

Thanks again for all of your support and kindness!!

Amanda

 
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