So far, my doctor doesn’t think I have lupus … based on my labs. I’m not totally convinced, though, since I know that the labs aren’t the most reliable. However, I do trust my doctor a lot so I’m kind of torn.
She had me meet with a nutritionist on Wednesday to see if some food stuff might be causing all the inflammation & as a regular part of check in they took my vitals. Although I wasn’t really feeling “sick” (extremely tired, yes) I was running a slight temp of 99.5. My normal temp is 97.6, so that was a little up for me. Also my BP was on the low-ish side, but not concerning. Like 98/60 I think.
Anyway, I’ve been running this low grade fever since then, so I’m on day 3 now…that I know of. If they hadn’t taken my temp at the doctor I probably wouldn’t know it. I tend to NEVER run fevers, even when I’m terribly sick.
I know that a low grade fever can be one of the symptoms, but how long do you let it run before asking the dr about it? It could be I’m just fighting off some bug, but how do you know? I don’t necessarily feel sick, but I feel like I have NO energy and the area around my neck and ribs has been really hurting.
I guess what I’m asking is how do you know when to chalk something up as a possibly symptom to ask your doctor about, or maybe you’re just fighting off a little bug??
In May of 2013 I was in bed with a fever of 99-100 for a week.and I had muscle and joint pain.
After that I went to my pcp and they ran a lot of tests. My ANA was pos and DNA was also.
The numbers were very high so they sent me to the first Reaumatolagist. She asked me if I had mouth sores and I said no and she said well I don’t think you have Lupus just stay out of the sun
Well I still was having a lot of problems . In the meantime I got another PCP and she was pissed that nobody followed up so she ran more bloodwork and it was still Pos and my Liver count was way off. So she sent me to another Reaumatolagist and he ran more test.
Anyway it turns out not only do I have Lupus but I have Autoimmmune Hepatits and Myositis.
So if you don’t get answers just keep pushing for answers and or get a new Dr that will dig further. If that first Reaumatolagist would have listened or ran more test It might not have affected my Liver. Take care and hope you get some answers
Mention the fatigue and pain as well. The dr needs all info. Lupus is diagnosed with combination of lab tests and symptoms. You can’t get proper diagnosis without you providing all your symptoms to the dr
Is your doctor a specialist? I saw my family doctor over ten years and was never diagnosed with anything. Saw a specialist and found out I have Lupus, Psor. Arth., and Fibramyalgia.
Carla - at my last apt a few weeks ago, I brought her in a list of ALL my symptoms. I kept daily track of everything & printed out the whole list for her. So she's very aware of the fatigue & pain, but she just doesn't think that it's lupus because of my labs. She did think there was some kind of inflammation, which is why she sent me to the nutritionist. I'm also waiting for a referral to the neurologist.
cbtbjb - she is not a specialist, just a regular OB
low grade fevers seem to be just part of the drill, I always run between 99-100 even on the days I'm feeling ok. Keep pressing for those answers, do you actually see an OB rather than a pcp or a rheumy, I ask because unless your pregnant I can't imagine how an OB could be of any possible assistance especially if you suspect Lupus.
she's kind of a pcp that specializes in OB, I think. I was rather expecting her to refer me to a rheumy but after my last labs she's kind of going more down the food route.
From everything I've read of others' experiences, and from my own, I don't think I'd trust a regular doc to diagnose (or rule out) Lupus. They simply don't have enough knowledge and experience with this very confusing and difficult disease to make that kind of call. I highly recommend asking for a rheumy referral. If it isn't Lupus, it won't hurt to get a rheumy to weigh in on it. If it is Lupus, a rheumy would be the one who could sift through the nonsense and be able to tell. Additionally, I highly recommend doing some research into the rheumys in your area to find those that work with Lupus patients. A rheumy who is really only used to dealing with geriatric or injury-related arthritis isn't gonna be much help. Best of luck!
I agree that I would only see a rheumatologist for lupus diagnosis. I went to a specialiist in chronic fatigue for a couple years, and he sent me to ther specialists, including a rheumatologist. When I was finally diagnosed, I went back to tell him, and he didn’t even know the 11 point lupus criteria. I had the ANA, the malar rash, low platelets, fatigue, low grade fever and eventually pleurisy or costichrondritis. I had the criteria. But until I saw a rheum AFTER I got the pleurisy, I didn’t- and he didn’t recognize that this was a lupus symptom. I found a rheum and she diagnosed me immediately from my records- she didn’t even wait to do her own blood work first. So I think most doctors treat lupus like regular illnesses, and it 's different.
Eating well is good, and important. But the rheum will focus on your symptoms and blood work. It’s always good to keep a record of what is happening with you, if just for your own peace of mind and how you do that is up to you. I tend to jot random important things in a notebook, because I lose scraps of paper. The person who writes the blog " Despite Lupus " keeps an excel spreadsheet. Those are the extremes, probably.
I was under the impression that in order for my doctor to refer me to a rheumy, she first had to suspect a reason to. And although I do feel miserable, there isn't really anything in my bloodwork yet to give me a reason. So far, all my ANA stuff looks ok. In fact, my number was actually lower during the middle of a bad flare. A few of my #'s are:
SED rate, manual 11
dsDNA Autoantibodies 7.2
RA titer <20
CRP .52
C-ANCA negative
P-ANCA negative
my sister has had similar symptoms (don't think she ever had the fever or extremely dry eyes, though) and she has felt a lot better since eliminating corn, so she's really pushing for me to try that, too. I just feel confused, though. :(
oh, and I've kept daily track of symptoms for about a month now ... I just write things down in the calendar on my phone & before my doctor apt I just printed it out.
Your doctor works for YOU. If you suspect you need to see a rheumy, and you have valid reasons to, it shouldn't be an issue. Bloodwork does NOT show all, by any means. Bloodwork should not be the only criteria to be sent to a rheumy. My bloodwork has never shown any sign of Lupus. However, my rhuemy feels there is little doubt, due to my other symptoms. Don't let yourself OR your doctor get hooked on bloodwork only.
I seriously expect that one of the reasons such a low percentage of Lupus patients are ANA-negative is because too many docs are relying on the bloodwork heavily, and thus folks who SHOULD be diagnosed aren't getting the proper diagnosis. ::steps off of her itty-bitty soapbox::
You are right, Talencia. I posted the 11 point criteria for lupus again, as a blog on this site. You have to have 4, not all at once, but convincingly. The blood work is part of the criteria.
You also need to be careful to not diagnose yourself as there are many disorders that also meet several of the criteria GI disorders like Crohn's etc can cause multi joint arthritis, sun sensitivity can come from multiple medications unrelated to lupus, ANA titers can be elevated for a variety of reasons other than autoimmune diseases. Altho we should know all we can about our illness some faith and trust needs to placed into the doctor's hands to interpret symptoms and labs correctly
thank you poobie :) I'm trying to keep a good, open mind & I do trust my doctor ... but I know I have a tendency to obsess over things & I'm trying not to do that here. :) I need to find myself a distraction lol
I posted the list under blogs on this site. Low grade fever can go on a long time. Weeks, and it can be related to infections and various other reasons. Lupus is one of them. I’ve had them from hot weather.
