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Wow, this is great -- thanks, Maria. I'm so glad that you're doing well on the medication.
Isn't higher blood pressure when you're in pain normal? I normally have pretty low blood pressure (normally 80-90/50-60) but I've noticed that when I'm having a bad day that it gets a lot higher. I just figured it was like the stress of pain or something. (Yeah ... my scientific rationale.)
Do you have frequent fevers? I never really take my temperature, but when I do it's normal. I think that this is one of the most common lupus signs so I'm hoping maybe this rules it out for me.
Thanks for the lab test website! This is really helpful. When I get a hard copy of the blood tests I'll have to go back and check it out.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Thanks, Ashley. The "classic" lupus rash is the butterfly rash that Linz mentioned -- but you can also get different kinds of rashes elsewhere. I think most common sites are upper body (face, chest, arms, scalp) but they can really happen just about anywhere. From what I can remember reading I think typically they're red/purple and often scaly. But I also think lupus sufferers can have normal red non-scaly rashes, too.
In my case, although my rash could definitely fall in the descriptions of lupus-caused rashes, so could a lot of other rashes. So, now I'm not too sure why my GP thought it might be from lupus, but I'm not concerned about it anymore.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Thanks, Michele! That was all great information.
As for the endo, no, it doesn't cause joint pain/swelling, but it can often cause fatigue and lower back pain. And like you said it just makes you feel crappy in general. Endo gets worse the more estrogen you have in your body, but I don't think that endometriosis itself affects the estrogen levels. Not really sure on that one, though, guess I've never thought about it.
I didn't realize that there was chest inflammation they couldn't see on x-rays. Ugh! If they can't see it on x-rays then how do they know it's there?? 
As far as lymphoma goes I thought that since my CBC was within normal limits that this rules out any kind of cancer? Am I continually making blithe erroneous medical assumptions?? I definitely planned on asking about the swollen lymph nodes. Mine are often painful, though, which I think is a good sign, because with cancer it's painless, right? (oops, was that another wrong assumption?)
The rheumy sent me some paperwork to fill out ahead of time -- it's a nice huge long list, so I should be able to get down all of my symptoms. Of course, if he's like any other doctor, I'll spend ages carefully filling everything out and then he won't even bother to read it. 
Thank you for all of your help -- I know that you're having a hard time typing right now so I really appreciate it. I hope your increased drugs kick in SOON and you start feeling better!!
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Hi Jen! Many times, soft tissue damage or swelling won't been seen on x-ray. They will palpitate the area, fancy word for pushing on it till it hurts , and pretty much go from there. A lot of my soft tissue damage is from the synovial lining around the joints being swollen and they can see that but if you have ever sprained an ankle or something of the sorts, that kind of stuff usually doesn't show up!
I'm not totally up on my Lymphoma. Not sure if the glads actually hurt or just swell? Not sure how the blood work would turn out. I haven't looked into too much but the rheumy brought it up several times and when I asked her how would I know if I had it, she said the first symptom is often the gland swelling. I've just kind of filed that in the "Gee, that would suck if I got that" category as I've just got too much else to worry about right now! 
A lot of auto-immune issues, especially in the early stages are kind of like IBS, not always a definitive test to say yes or no. If the dr doesn't take time to actually read your list of symptoms, find another dr. My old rheumy often blew me off like that but I had typed out FOUR pages of stuff for the new rheumy and she sat down and read it in front of me and asked questions as she was reading!
I'll be at work until 6 today then I'm taking along weekend to catch up on house work and stuff so I won't be back on line until next Wednesday but please keep us posted!!
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Taking it one day at a time.....
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Hi Jen,
All he put me on was 500 mg of naproxin twice a day. I tolerated it fine but after a month I didn't see any difference in my symptoms so I am not taking it anymore. I don't want to stress out my tummy.
Based on the x-rays and bloodwork the Rheumy says I have inflammatory osteoarthritis. There is really nothing they can do for it. No medication that will stop the progression of osteoarthritis.
I have another appointment in Sept. and was told to call if my symptoms got worse. So far things seems to be staying pretty much the same. Frustrating to deal with that is for sure.
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Janey
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Hi Jen,
I don't have lupus but I too have a positive ANA test. They ran the test again because they were surprised that it was positive and it came up positive again. I had thyroid cancer as a teen and am now hypothyroid as it had to be removed (and I am taking synthryoid daily) I also have ulcerative colitis. My family doctor was concerned at first but my GI doctor says that more than likely it is a combination of the thyroid and UC that's causing the positive ANA result.
I haven't had any signs of RA or lupus so I guess they're right that it's other autoimmune issues that are causing the positive.
I hope it turns out to just be a random positive ANA result for you too.
Good luck.
Jenn
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update
#272591 - 07/05/06 10:44 AM
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jen1013
Reged: 05/06/05
Posts: 1322
Loc: the wabe
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This was a disaster!! The doctor was horrible. I didn't even see him until 10:30 and I had a 9:00 appointment. He barely examined me at all, other than jabbing me at the traditional fibro tender spots and then half-heartedly rotating my knees around. And he didn't read the huge long form they'd made me fill out.
He ruled out lupus by asking me three questions -- 1) if I ever had mouth sores that lasted beyond three weeks, 2) if I ever had fevers and chills, and 3) if I had bald patches on my head. Okay, I mean, it's not like I *want* to have lupus, but I'm pretty sure that you can still have lupus even if you don't have any of the above symptoms.
So then he said I probably had fibro because of the tender spots. Whaaa..??? The only spots that he touched that hurt were my chest, and that whole general area is painful when you touch it, not just the place he touched. Okay, but see, according to him, fibro is caused by sleep disturbances. So, the reason that I allegedly have fibro is because I'm not sleeping well. And then he scheduled me up for a sleep study.
Am I the only one who sometimes feels like they're at the Mad Hatter's tea party when they go to the doctor?
Oh, and then they made me watch this really crappy video on fibro. It was clearly done around 1989 judging from the really bad hair. And there was one lady who had her eyebrows so arched and plucked she had a perpetual look of surprise. Which really creeped me out. My favorite was when they mentioned "tri-cyclic agents" and showed a drawing of this guy in a trench coat on a tricycle. Clearly not anyone you'd want near your children.
Anyway, he did order a bunch of bloodwork, so my plan right now is to hope it all comes back negative so I don't have to deal with this guy again. I've started on some thyroid medication, so I'm hoping like mad that'll help. I have to see him again in one month and if everything is OK then they'll just check me about once a year for 3-4 years to make sure nothing's developing. If anything looks suspicious -- then I'll go to a different rheumatologist, because I really hated this guy.
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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What?! This guy's a doctor?! I wouldn't trust him to go over the bloodwork accurately! I suggest getting a second opinion, anyway, and taking your test results with you. Ugh! I'm so disgusted with how this rheumy treated you, Jen. And I'm also totally creeped out by your description of the fibro video. Ewwww!
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My favorite was when they mentioned "tri-cyclic agents" and showed a drawing of this guy in a trench coat on a tricycle.
Lol! Ugh.
You're right - you can have lupus without those three symptoms. There's actually a list of eleven criteria that a rheumy will use to diagnose lupus; in addition to your medical history and bloodwork, a patient must have at least four of the 11.
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Re: update
#272602 - 07/05/06 12:02 PM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Well, that sounds just awful! What a jerk!! whats the deal with all the crappy doctors?? I agree, you can have Lupus without having those three symptoms! Very frustrating!! I'd suggest waiting until your blood work comes in. Be sure to have them send/fax you a cope of ALL the blood tests they did and what the results are. I'm waiting for a copy of mine that I had done last week and then I can tell you the names of the actual blood tests. How did this dr explain the swelling that you get? Fibro does NOT cause swelling!!
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Taking it one day at a time.....
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