Waiting for diagnosis

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angioletto
New Member


Date Joined Feb 2015
Total Posts : 4
   Posted 2/15/2015 10:45 AM (GMT -6)   
Hello,

I have a lot going on, and my PCP has suggested that I may have lupus. She ordered some blood tests and I am waiting on results from those. In the meantime, I am going a little crazy waiting to find out. I have had so many problems for so long, that it would almost be a relief to have a diagnosis.

I don't even know how to describe my symptoms anymore because so many of them have become "normal" for me, and some have come and gone, and there is overlap (does stress cause GERD or does GERD cause stress?)

Here's what I've got:

-I am cold all the time. My hands and feet go numb, my nails turn purple. Everyone around me is fine, and I am shivering. If I happen to be a comfortable temperature, then I know that it must be hot wherever I am. Winter is awful. I have to take hot showers every night just to get my blood flowing and feel normal again.

-I am tired all the time. I struggle with whether this is health related or normal. I have two kids and a demanding career. But I could sleep 10-12 hours a night and still feel tired all day. Have been tested for narcolepsy - negative.

-Light-headed, dizzy spells pretty frequently. I have always thought this was low blood sugar related. Sometimes I feel that way, eat a small piece of chocolate, and I am fine. Other times the feeling comes back over and over through the course of several days.

-Achiness and joint pain

-General ill-feeling - some weekends I crash in bed Friday evening and stay all weekend. I will have a slight fever (99-ish) and just feel gross. I always assume it is some sort of bug, but no one else in my hosuehold ever seems to catch it.... Happens to me maybe once a month?

-Blotchy skin that reacts badly to sun - I think I have the butterfly rash, although it is more like butterfly shaped redness than a bumpy rash.

-Awful GERD. I have been treating for this for 10+ years. Meds, EGDs, signs of Barrett's.

-Weight fluctuations - overall I am very petite. I am 5'1". For awhile my GERD affected my ability to eat and I got down to 95 pounds. Now, 2 years later, my GERD is somewhat more under control, and I am 20 pounds heavier. I don't really know if it is because my GERD has improved, or if my body is being weird. I don't feel like I really eat all that much more now than I used to.

-IBS- mostly C, but occasionally D

-Anxiety and panic attacks - awful, all the time

-Recently I have started craving salt like crazy.

Of all my problems, the worst are the constant coldness, the fatigue, and the GERD. I'm not convinced that I have lupus, but I am anxiously waiting for results from my PCP. I don't even know why I am posting here other than I am frustrated and anxious to find out why I feel this way all the time. I feel like I live in a world where everyone is tired, everyone has headaches, etc, but then I wonder if I am like everyone else or if I do have a medical problem that is contributing to everything.

What if my PCP calls and says blood test results are normal? I guess that is my greatest fear because at least a diagnosis would give me something to work towards.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 2/15/2015 4:05 PM (GMT -6)   
Lupus is NOT diagnosed by blood tests -- blood can be normal and you can still have Lupus or a handful of other auto-immune diseases. These are diagnosed & treated by a rheumatologist, not a PCP.

Check out Lupus 101 for more information.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

angioletto
New Member


Date Joined Feb 2015
Total Posts : 4
   Posted 2/15/2015 4:23 PM (GMT -6)   
I see that a blood test does not make the diagnosis, although she said she wants to test my ANA levels and also see if I have any other issues (I have dealt with anemia in the past, and they are always checking my thyroid levels, which always come back frustratingly normal). So I guess at that point she is going to either refer me to a rheumatologist, or not. Before seeing my PCP I wasn't even aware that I might need to see a rheumatologist, so I guess this is the next step towards that?

about two years ago I saw my PCP complaining of the same symptoms, for the most part. She did the full blood panel, never mentioning lupus, or a rheumatologist. A couple days later I got a call that my blood test results were "normal" and that was it. Just a voicemail saying everything was normal and no follow up to see what the issue could be. So I assumed that meant that I am completely normal, and perhaps just being a baby about my symptoms. From seeing her, I never would have even known that I may need to see a rheumatologist.

This time could have ended up exactly the same if she hadn't mentioned lupus as a possibility. So I guess I am waiting for my PCP to confirm that I need to see a rheumatologist, but even if I don't get that recommendation I will make an appointment to see one anyways. Because I feel like I am not "just being a baby" and that it really isn't normal to feel this bad so frequently.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 2/15/2015 4:29 PM (GMT -6)   
Angioletto,

Sounds like you are making the best decisions for your health!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/15/2015 9:38 PM (GMT -6)   
Are you taking steps to shield from the sunlight?
Many of us have issues with UV rays. I am one of the very sensitive ones and I have to wear special sun blocking clothing. I wear clothes from coolibar.Com, sungrubbies.com, and Columbia clothing. I even wear hats and gloves.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

angioletto
New Member


Date Joined Feb 2015
Total Posts : 4
   Posted 2/15/2015 9:52 PM (GMT -6)   
*sigh* What sunlight? If it ever returns I definitely take steps to shield myself, which sucks, because sunlight and warmth from the sun actually make me feel amazing. The after effects, not so much.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/15/2015 11:42 PM (GMT -6)   
Even on cloudy days the UV rays still come through. They even pass through windows. Also fluorescent lighting, CF bulbs, and halogen bulbs emit UV rays.
Halogen bulbs make me very ill. I begin to shake and feel like I'm going to pass out.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

angioletto
New Member


Date Joined Feb 2015
Total Posts : 4
   Posted 2/17/2015 10:06 AM (GMT -6)   
Couch tater - I am sorry the sun affects you so badly. Fortunately I only seem to have problems in direct sunlight. Regardless, with negative temps I am bundled up enough that I don't think I am getting much indirect exposure right now.

Test results are in. I saw them myself and have not reviewed with Dr yet.

Low hemoglobin, hematocrit, and mch. Normal, but on way low end for ast, alt, tsh. Normal but on way high end for rheumatoid factor. Ana negative. Waiting for doctor to call and I am going to ask for referal to rheumatologist.

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 2/18/2015 9:50 AM (GMT -6)   
I'm curious as to what you mean as skin blotchiness. Is it a purple, lacy looking rash? If so it could be levido reticularis which is usually a reaction to cold temps. I get it in the summer too when I've been in air conditioning. It's related to connective tissue disease but is generally a benign condition. It's a vascular reaction to cold.
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss
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