Negative ANA, but PCP thinks I have lupus....

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lv2smle
New Member


Date Joined Jul 2011
Total Posts : 1
   Posted 7/11/2011 11:46 PM (GMT -6)   
So, I have been having various problems off and on since I was about 17, I am 25 now.

Before I go into my question/comment/etc :) I'll list some of what I've had...

~Growths and red rashes in my mouth and throat. Sometimes the red rashes hurt.
~Bouts of feeling like I have the flu really bad. Sometimes it lasts a day, sometimes weeks.
~Raynauds Disease
~My nose and skin below my eyes gets red, like it is burnt, after I have been in the sun. But it doesn't hurt like a sun burn.
~My joints and sometimes my muscles hurt. Like an aching feeling, or like I sprained them, when I know I haven't.
~Migraines where I will throw up and have to get a shot to knock me out for about 20 hours.
~Constant dry/sore throat. I always have a dry cough.
~Dry eyes, but then I always have a lot of discharge during the day and wake up with a lot of discharge and dried stuff.
~My whole chest cavity hurts a lot. It gets worse at night, when I lay down, and sometimes I have a sharp pain when I breath.
~Sharp, random pains in my abdomen.
~Sometimes I black out. Not completely fall to the floor and faint, but enough to have everything go black and have to sit down.
~Always feel really tired. Like my body is jello and my eyelids have 100 lb weights on them. Sometimes I am better than others, but when I am tired, EVERYTHING is tired. It takes all I have to stay awake.
~I get bronchitis/pnemonia at least 2 times a year, usually 3-4 times a year. Takes me anywhere from 1-3 months to get over it!
~Trigger finger
~Multiple UTI's
~Nausea
~Night sweats, sometimes durring the day too.
~Hands and feet go numb at night.
~Bruise easily, also have red dots on parts of my skin, I was told it was something that started with a P, but I can't remember the name! :)
~Sometimes feels like I have air pockets in my shoulders.
~Pretty constant dull headache, sometimes feels like both the hemispheres in my brain are pulling apart from each other.
~Asthma (inhaler doesn't really seem to help when I've tried it).
~IBS
~Chronic Fatigue
~Acid reflux

There is other stuff, but that is the most of it! :)

So, after going to my PCP a few times in a short period, he said he thought I might have lupus or Rheumatoid Arthritis. He did some blood work. He decided that he thinks I don't have RA, but that I could have lupus or something Autoimmune related. My ANA was in normal range, the Rheumatoid factor was in normal range, but I had a very low Vit D level, and then I had a few other tests that indicated 'inflamation.'

He sent me to a Rheumatologist. After waiting 3 months to get in, I didn't have the greatest of experiences. He didn't look at the refferal notes the doctor sent, or any of the test results. My PCP suggested I write up all my symptoms and my medical history, which I gave to the Rheumy, but he didn't even look at that either.

At the end of the appointment he said that he thinks that I have 'too high of expactations' for myself. That I am not going to be like I was when I was 17 when I am 25 now and that I am just going to have to deal with being sick.He said he thought I should go off the NSAID's the PCP perscribed (which helped a little, but not completely) and that if I ignore the pain and problems they won't seem as bad as they are. That I do not have lupus or any other problem, other than expecting too much out of my body and not exercising enough. I was really frustrated and chose flight over fight or freeze, so I left pretty upset and didn't know where to go from there.

I ended up calling another rheumatologist, and I have an appointment on Friday.

So I have some questions...

How is the best way to approach the doctor so they know I am being honest abut my symptoms and get across to them that they are worse then just normal 25 year old aches and pains?

From the list of some of the things I have been experiencing, would you see a possibility of having lupus? or something else?

Any other suggestions? I am just kind of frustrated because I've been having problems for so long and don't really know where to go from here! :) I do feel that it is not 'in my head' and that it is not just normal 25 year old aches and pains, but I don't want to keep going to rheumatologists if I keep paying them to tell me nothing is wrong when obviously there is.

Thanks for the help! (and thanks for taking the time to read this whole thing!!!!) Sorry it is so long!

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 7/12/2011 2:31 PM (GMT -6)   
I've found it best to approach drs without a diagnosis in mind. Let them use their expertise, education, and experience to figure it out. Some of the things you listed are not symptoms, but diagnosis. Like "IBS", "Chronic Fatigue" and "Asthma" -- if they've been diagnosed by a doctor say "My ___ dr diagnosed ___ in _date_. Otherwise, stick to symptoms, like -- "I always feel tired, even when I first wake up from an 8 hour sleep".

A decent rheumy will have you fill out a fairly extensive symptom form ahead of the appointment and review it with you. And dr, anywhere, that doesn't look at any evidence (did he even examine you?) and yet draws a conclusion is not worth the time you spent there.

Good luck
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/12/2011 2:56 PM (GMT -6)   
Did you know that acid reflux can cause acid to come up into your lungs causing asthma like problems? Inhalers won't help the reactions. Do you see a GI for your digestion problems?
Come over to the GERD forum and we can discuss ways to help that area of your problems. But I have been researching Lupus and how it affect areas of the body. I've found it can cause all sorts of issues with your digestive tract.
Joy
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