Help, saw doctor today

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Regular Member

Date Joined Jun 2007
Total Posts : 40
   Posted 2/11/2008 7:36 PM (GMT -6)   
Just a little back story for those that have not read my previous post. Dx '05 w/ MCTD and sjogren's for the last year my labs have been normal. But I have had body aches, low grade fever, abd pain, sudden onset blurred vision, and extreme fatigue. I have had every test I can possibly think of having.
I received a call from PCP office last week saying she wanted to see me Monday(today) to talk about labs that Rheumy did and discuss her discussion with Rheumy. Even though I have an appt for a follow up with Rheumy. So I get there today and she tells me that all labs are normal and that the symptoms I have can not be caused by my autoimmune disease. I asked so are you saying I don't have or never had MCTD or sjogren's and she said I don't know. She said I think you are just anxious and need to have counseling. I told her I am not anxious I am angry that you seem to think this is all in my head. I told her fever for 3 weeks straight even after taking prednisone is not normal and if there is a way to fake a fever I am unaware of how to do that. She told me she could not help me and pretty much told me she was done trying to help me. She said I could see infectious disease doctor if I wanted to. Now I don't know what to do.
Now I am wondering if it is all in my head. Could I be crazy? Crazy people don't know they are crazy so maybe I am. I know I feel bad all the time I know I had positive ANA, SSA, SSB, and MCTD antibodies from October 2005-January 2007. I know I did not imagine that. Suggestions please?? I am so frustrated
Dx: Mixed connective tissue disease '05, sjogren's '05, GERD '05, insulin resistance '01, ADD '01, major depression '98, polycystic ovarian syndrome '97 Hypoglycemia '07 hypothyroid '07

adderall, prozac, synthyroid, multivitamin

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 2/11/2008 7:43 PM (GMT -6)   
Your doctor did you a big favor!! Its actually a blessing that she was honest about not wanting to treat you. Find another primary care doc and start over. Get coppies of the labs from 05-07 and go to your rheumy appt w/o worrying about this doctor.

You are NOT crazy. You can have lots of pain and symptoms w/o positive blood work. There ARE many good doctors out there . . . we just have to be diligent in seeking them out. Most of us have had issues with doctors and have had to search for better care . . . so don't give up, ok!!

I know this is really hard to take, but when you get a new doctor who respects your need for treatment, you'll be happy she ditched you.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

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UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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Regular Member

Date Joined Oct 2003
Total Posts : 495
   Posted 2/11/2008 7:48 PM (GMT -6)   
kncb, no you are not cazy...It just means that it going to take a little longer to find. I know how doctors can be, I went to 3 -4 doctors and was told that I didn't have a Hurnia....but did. I am sorry that you don't have an answer.

Just take sometime for youself and is a cup hot tea!!!
Enjoy what you can today and leave the rest for another day.

Regular Member

Date Joined Oct 2006
Total Posts : 221
   Posted 2/13/2008 5:36 PM (GMT -6)   
KNCB... good riddance! There is a doctor here in our town who sounds just like her. She misdiagnosed a very good friend's problem as "anxiety". The friend died a year later with a large sinus tumor. I am surprised this woman is able to keep practicing. I'll bet all doctors wish they could pick and choose the easy patients! I would love to give her a piece of my mind!

I went through three doctors before I found one who would listen and sent me to a rheumatologist. I still remember that first doctor handing me Lexapro! Positive labs like the ones you have had indicate major autoimmune activity within your body. These diseases can lie dormant for a while, but they dont just go away!

No one knows your body as well as you, keep looking until you find the doctor who will help you. I KNOW its frustrating, but your children need their mother.... thats what I had to keep telling myself when I just wanted to give up.

Heres a huge {HUG}.
Mother of four, full time Systems Analyst
Crohns, Lupus (SLE) Jan 08, Pancreatitis Dec. 2005
Meds:  Medrol injections, Cellcept, Vicodin, Benadryl, Zyrtec

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 2/13/2008 6:07 PM (GMT -6)   
You are not crazy. I spent years being told I was crazy. I was ready to give up and let whatever was wrong with me kill me if the doctor thought nothing was wrong the day I walked into my rheumy's office for my first visit. I had been to so many doctors, many had seen and dismissed the butterfly/malar rash, my swollen red warm and painful joints, the constant pluersy, the hair loss, mouth ulcers, even my history of pericarditis was dismissed. I had one doctor tell me I was causing all my visable symptoms and the few small abnormalities in my blood work with my mind. I did not trust the medical profession to save me from the illness that was destroying me. Yet, my rheumy took one look at my symptoms, history, and the pictures of my facial rash and I was diagnosed in less than 15 minutes after meeting her and she outlined a plan to begin treatment. IT has been a slow hard fight since then, but she literally saved my life, on more than one occassion. She didn't just treat my lupus, when my gallbladder stopped working and I was unable to hold ANYTHING down my PCP and one of the local ERs decided I had IBS and sent me home with no treatment. I called my rheumy because I was in so much pain and also because I needed to hold down my lupus meds. She insisted I got to the other hospital and ask for a special test. That test showed my gallbladder wasn't functioning. When they took it out it was 3xs the size it should have been. It could have ruptured just as an apendix does, but along with spesis would come digestion of my internals by the bile and other digestive enzymes that would leak out into my abdominum. I would have died a horrible agonizing death. Instead I had a minor surgical procedure that removed the gallbladder. My rheumy is a miracle to me.

What you need is to find a doctor who cares, one who will not give up just because nothing makes sense. My blood work is negative. Yet, I have almost every other one of the 11 criteria except for kidney issues. So basically at any given time I would fit 8-9 of the criteria because occassionally one antibody test comes back weakly positive.

Get copies of you lab results and start from scratch with a new team of doctors. Your pcp is an idiot, but at least you know what she thinks instead of being lied to. Never believe you are crazy simply because doctors refuse to believe that something can be wrong with normal labs. My great grandma and great aunt both died because their labs took too long to go positive.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone, Imuran, Procardia

Regular Member

Date Joined Apr 2007
Total Posts : 39
   Posted 2/13/2008 6:07 PM (GMT -6)   
I'm so sorry you had to deal with a doctor like that one, I think we have all seen one of those through the course of our illnesses.  I have doubted myself once or twice over the last 7 years and in the beginning I even went to the suggested therapist.  They had me convinced I was doing it all to myself.  But all the advice you have read is soo true, find another doctor and keep plugging away until you get the help you need.  Keep listening to your know when something is wrong.  It's hard I know, but try not to doubt yourself.  Your not crazy your doctor is!
Best Wishes

Dx:  Lupus, Hashimotos Thyroiditis, Peripheral Neuropathy, Fibromyalgia, Arthritis 
Rx:  Plaquenil, Levoxyl, Lyrica, Ibuprofen, Hydrocodone, Lasix, Lunesta 

Regular Member

Date Joined Jun 2007
Total Posts : 40
   Posted 2/13/2008 7:21 PM (GMT -6)   
Thank you! Thank you! Thank you! to everyone that responded. I am sorry we all have to go through this to get medical care but it is good to hear others have doubted themselves before. I was feeling like giving up but now I feel recharged to keep looking for a medical provider with compassion.
Dx: Mixed connective tissue disease '05, sjogren's '05, GERD '05, insulin resistance '01, ADD '01, major depression '98, polycystic ovarian syndrome '97 Hypoglycemia '07 hypothyroid '07

adderall, prozac, synthyroid, multivitamin

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 2/14/2008 11:00 PM (GMT -6)   
I just had to add my 2 cents! You are not crazy. I think we have all felt that way at times. Please find someone who is willing to help you get to the bottom of your problem. To me it's worth it to drive an hour to see my gaurdian angel doc! I had a nightmare of a doc before her and have had some pretty frightening experiences. I've been treated like a dope head, a psychopath and everything in between!!! I don't know if you believe in prayer or not, but pray for guidance to the right doc. It worked for me!!! Judy

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 2/15/2008 10:30 AM (GMT -6)   
kncb - I am also joining in to tell you that you are NOT crazy!!! I get so frustrated when I hear about docs who try to tell us we are anxious or depressed when labs come back normal. It's so important to find a doc who will really listen and will take into account your current physical symptoms, you health history and any past and current labs. I know how hard it is but try not to let it get you down. You know your body better than anyone else and you know if there is something wrong with you. Trust yourself!

Hang in there and take care.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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