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Thread: I'm not sure what to do (not diagnosed yet)

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    Default I'm not sure what to do (not diagnosed yet)

    I'm not sure if I should have my GP run some tests to look for lupus or if I should just see a rheumy first. I already have an autoimmune disease (psoriasis). I have a plethora of symptoms which can easily be identified (by my research) as lupus, which scares me. But I want answers. I've had an ongoing fever every day for at least a month. In the morning my temperature is normal but as the day progresses it goes up and up and up. Though it never hits 101. Stays between 99 and 100.9. Currently at 11pm it's 100.2. I don't know if it's the (possible) lupus that is causing my joints to ache or if its the fever which is caused by some other issue. I don't have any active infections that I know of and would think if I did have an infection that the fever would be 101+, especially since it's lasted for over a month.

    I guess I don't know how to approach my doctor. Should I just go in there complaining about the ongoing fever and the arthritis? I found a site that listed lupus symptoms and I checked them and it appears I have quite a few of them. My GP is a hard-@ss. He's very good at what he does, but can be weird when I ask him for a referral, sort of like I offended him that I even asked. That happened when I asked to see an endocrinologist for my diabetes. He knows about the massive fatigue I've had in the past, I brought it up to him every time I saw him for a long time. He never said anything about it and never tested for anything at the time. But when I told him I still had the fevers about 2 weeks ago he was immediatly shocked and gave me a mini-workup of checking my lymph nodes (slightly swollen), temperature, listened to my lungs and heart, checked in my nose, throat and ears. I tested positive (slightly) for strep throat so he put me on one course of z-pack antibiotics. I took them, my throat felt better (though it never was really all that sore, just swollen a bit - I don't have my tonsils anymore and hadn't had a sore throat since having them removed so I wasn't sure what a sore throat would feel like without them). The fever persisted. He then checked my blood for mono, I apparently had mono (and didn't know it??) as the antibodies were still showing up... Not sure what to think about that since my parents didn't have mono and I'm a homebody only leaving the home to go to doc appts. July last year I was diagnosed with blood clots in my pulmonary arteries and right lung. Been on coumadin for it since. I tested negative for like 14 known blood clotting diseases/conditions. I have psychiatric issues.

    ANYWAY that's my story. I guess I didn't mean for the post to be so long. I'm just looking for how to broach the subject with my doctor. I want him to test me for the ANA and nuclear antibodies. My doc hates it when I go into the appointment knowing a lot about a certain subject that I want to talk to him about. So I typically avoid saying much in the appointment, just hoping he tests me for whatever it is I'm after at the time. I did somehow manage to have him test me for mono while making it seem like it was his idea. haha

    Would mono antibodies show up if I didn't have mono? Like from lupus? Could it activate it or something?

    Anyway thanks for reading. I hope to get to know you all soon. I have a feeling I'll be here for quite some time asking questions and finding answers to my complaints. HUGS

    Brittany

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    about 90% of adults show positive for mono. Most people don't ever know they had it. It just affected them like a short virus. There is some research being done about a link between mono and Lupus however it is in the very early stages

    As far as your other question, I personally, would ask to see a Rhuemy. It is the best place to start when it comes to AI (AutoImmune) diseases. Most Lupus symptoms are symptoms that could show up for many other things so you really need a professional to look at everything to make that call

    Hope that helps
    Mari

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    Thanks, tgal. I'll have to start researching mono+lupus and see what I find, that's interesting. I have had mono 2x before when I was in middle school and then early in high school I think. Maybe I've had it 3 times. Not sure. But I thought I remember being really sick with it and strep at the same time both times. Felt like I had the flu a lot of the time. I was feeling crappy for weeks or a month or more. But the fever associated with mono is 101+ (mine doesn't go that high) and the fever should only last like 10 days... So that's why I'm doubting that I had mono.

    I think I'll let my doctor do whatever tests he wants to do for the time being, since I'm just starting out on this journey of self discovery. If/when I get worse I'll push to see a rheumy, or call my mothers rheumy (she has RA) and see if I can make an appointment without getting a referral. I only have 2 more years to deal with my current doctor since we'll be moving hopefully in 2 years to las vegas, from central ohio. So I'll just have to get a slew of new doctors when we move. GP, rheumy, psychiatrist, dermatologist, dentist, OB/GYN, etc.

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    Quote Originally Posted by xdunlapx View Post
    Thanks, tgal. I'll have to start researching mono+lupus and see what I find, that's interesting. I have had mono 2x before when I was in middle school and then early in high school I think. Maybe I've had it 3 times. Not sure. But I thought I remember being really sick with it and strep at the same time both times. Felt like I had the flu a lot of the time. I was feeling crappy for weeks or a month or more. But the fever associated with mono is 101+ (mine doesn't go that high) and the fever should only last like 10 days... So that's why I'm doubting that I had mono.

    I think I'll let my doctor do whatever tests he wants to do for the time being, since I'm just starting out on this journey of self discovery. If/when I get worse I'll push to see a rheumy, or call my mothers rheumy (she has RA) and see if I can make an appointment without getting a referral. I only have 2 more years to deal with my current doctor since we'll be moving hopefully in 2 years to las vegas, from central ohio. So I'll just have to get a slew of new doctors when we move. GP, rheumy, psychiatrist, dermatologist, dentist, OB/GYN, etc.
    Actually the effects of mono can last up to a year. My daughter is just getting over it and I just had this discussion with her doctor (one of the top 100 in the nation). The symptoms can come and go and the fatigue can last, as I said, up to a year. It can be a nasty virus
    Mari

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    Hi xdunlapx,
    First off I'd like to say welcome! Secondly, its good your GP is throuough, but personally I don't think any patient should feel intimidated by their doctor, especially when it's concerning their care or questions about their health-I mean that's what they're there for right? I've been there, done that! But no matter how good he seemed what it boiled down to was he couldn't set his pride aside and branch out my health issues to specialists or other physicians. Two heads are better than one and doctors too are only human, we can't expect one to know everything. On another note, I would assume since he did blood work, he would have done a routine CBC. If you had an elevated white count it might point towards infection or inflammation. He may have even ordered a crp- which is more specific for testing for inflammation.the first step I would take is obtaining all you recent lab results, possibly some you've had in the past for comparison and start from there. If there's any evidence, I'd bring them to my next apt and ask if he could explain the results. Perhaps in the future, I'd continue to collect any labs, tests etc results in a medical binder. This way if your problems persist or continue to get worse, and if you do end up seeing any sort of specialist you have your complete past medical history painted for them. Possibly saving you time & money in the long run so duplicate tests aren't preformed that may not be necessary. Lastly, I was curious to the duration that you've been in the Coumadin? Some patients can develop a sensitivity to it over prolonged use or you could be affected if your dosage has changed. Some side effects include: fever, joint pain, trouble swallowing, sore throat, etc to name a few. Here's a link to a longer list http://www.drugs.com/sfx/warfarin-side-effects.html on a side note, personally I also ran fevers from 99-101, occurring especially at night. In your case it may be unrelated, but I thought I'd mention it. I wish you luck and hope you find the answer to your questions!

    -Laura Ray
    Last edited by Bakedtater08; 04-10-2012 at 11:46 PM.

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    Quote Originally Posted by Bakedtater08 View Post
    Hi xdunlapx,
    First off I'd like to say welcome! Secondly, its good your GP is throuough, but personally I don't think any patient should feel intimidated by their doctor, especially when it's concerning their care or questions about their health-I mean that's what they're there for right? I've been there, done that! But no matter how good he seemed what it boiled down to was he couldn't set his pride aside and branch out my health issues to specialists or other physicians. Two heads are better than one and doctors too are only human, we can't expect one to know everything. On another note, I would assume since he did blood work, he would have done a routine CBC. If you had an elevated white count it might point towards infection or inflammation. He may have even ordered a crp- which is more specific for testing for inflammation.the first step I would take is obtaining all you recent lab results, possibly some you've had in the past for comparison and start from there. If there's any evidence, I'd bring them to my next apt and ask if he could explain the results. Perhaps in the future, I'd continue to collect any labs, tests etc results in a medical binder. This way if your problems persist or continue to get worse, and if you do end up seeing any sort of specialist you have your complete past medical history painted for them. Possibly saving you time & money in the long run so duplicate tests aren't preformed that may not be necessary. Lastly, I was curious to the duration that you've been in the Coumadin? Some patients can develop a sensitivity to it over prolonged use or you could be affected if your dosage has changed. Some side effects include: fever, joint pain, trouble swallowing, sore throat, etc to name a few. Here's a link to a longer list http://www.drugs.com/sfx/warfarin-side-effects.html on a side note, personally I also ran fevers from 99-101, occurring especially at night. In your case it may be unrelated, but I thought I'd mention it. I wish you luck and hope you find the answer to your questions!

    -Laura Ray
    He did check my cbc and it was mostly normal, my crp is high as is my sed rate. Though the sed rate is only high by like 2 points. my CRP is 18.9, the normal range is 0-4.9. I've been on coumadin since July 2011. I do have access to all of my labs now that my doctor's office uses something called Webview, it allows the patient to see their labs, current prescriptions, vital signs and weight recorded, etc. It's quite handy, I love it!

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    Quote Originally Posted by Bakedtater08 View Post
    Hi xdunlapx,
    Secondly, its good your GP is throuough, but personally I don't think any patient should feel intimidated by their doctor, especially when it's concerning their care or questions about their health-I mean that's what they're there for right? -Laura Ray
    I could not agree more.

    And, we should never lose sight of the fact that our various doctors and specialists work for us, and not the other way around. They are the employee, we are the employer, and as such, we have every right to question their judgement if we feel they are not doing the job they were asked by us to do. And sometimes, as with any employer, we have to fire an employee who does not do their job properly, and hire someone new who can.

    Never let someone who works for you, intimidate you, especially when the job involves one's own health. (rob gets off his soapbox)

    Rob

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    brittany,

    many of us hear stories about doctors not doing the right thing.

    remember that you pay him.
    he works for you.

    if you are not getting the results you need from a doctor......
    find a new one.
    if you are going to move town in a couple of years anyway, look now.
    a new doctor could get the ball rolling so you know what is going on with your health.

    never be afraid to stand up for your own health.

    i would personally go to a rhuematologist.
    they specialise in the type of medicine you need.
    a gp is by name only a general practicing doctor.
    he does not specialise.

    it sounds like you already have quite a few other medical conditions.
    it would be good to get a specialist to do a complete review on you.
    just to make sure everything is being covered.

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    You're right. My doctor does work for me, and not the other way around. I don't want to fire him yet since I have a feeling he may test me appropriately. We'll see. He wanted me to do a urine test last time I was there and I had gone to the bathroom right before the appointment in their office bathroom, so I had no urine to give. I'll make sure I don't go to the bathroom before I go to the next appointment.

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    Quote Originally Posted by xdunlapx View Post
    You're right. My doctor does work for me, and not the other way around. I don't want to fire him yet since I have a feeling he may test me appropriately. We'll see.
    In that case, just keep an eye on him, and swat him on the nose with a rolled up newspaper if he gets out of line.

    BTW-Welcome to WHL xdunlapx!

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