hurt and angry

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Regular Member

Date Joined Dec 2009
Total Posts : 26
   Posted 2/18/2010 10:23 PM (GMT -6)   
I had my big appointment today...let me start by saying...worst visit I've ever had...they did not have copies of all my blood work and did not feel the need to run any further tests. They told me my bloodwork they had all looked good and they feel there is no possible way I could have any autoimmune disease. The veteran doctor there preceeded to bash my pcp and rheumatologist back home. I know I don't like him but I don't think it very professional to talk baldly about a doctor to a patient...idk maybe it is just me. So they basically disregarded all the symptoms I told them I had and focused on the fact I can't sleep at night. I was told I have a sleep deficit and it is causing all of my problems. They gave me a sheet on healthy sleep hygeine and said if I follow it all my problems will go away. Oh and I forgot...this is the best part, the other doctor told me she has done intense research on these diseases and there is no possible way someone could have any of these diseases and not test positive. The symptoms can not come on first...if you test negative for an autoimmune disease then that is closed...I was told never to think about it again...Well I don't know what you guys think...but I think it's a crock of bull!!!

Veteran Member

Date Joined Sep 2009
Total Posts : 1176
   Posted 2/18/2010 10:45 PM (GMT -6)   
I agree with you....falsely negative bloodwork is very common in MANY autoimmune diseases, if not all of them!

The bloodwork and intestinal biopsies done to diagnose celiac disease are notorious for false negatives, for example. I myself am seronegative for rheumatoid arthritis, but you can see the damage in the joints in my hands and feet on xrays and I'm developing rheumatoid arthritis nodules on my fingers. All of my rheumies have agreed that I do have RA, despite the negative bloodwork.

The problem with autoimmune disease is that the doctors always test for certain well-known types of antibodies. But what if you are one of the (sometimes significant) percentage of people whose body makes a more exotic type of antibody that is NOT tested for? In other words, a "custom" antibody peculiar to you...or at least, not one of those tested for. Even though I'm not a microbiologist, I've been told by microbiologists that this is possible.

What if you are on immunosuppressants (like prednisone or Imuran) when you have the blood work done? Those meds suppress the formation of antibodies so if you're not making any that means your meds are doing their job! Of course your bloodwork will be negative in these cases!

Which should mean that your doctor will try to diagnose you a different way, without the bloodwork. Unless he or she is a doctor like the one you encountered...and there are far too many doctors like that out there. I'm so sorry you had to run into one of them!!

Are you able to see someone else for a second opinion?? You might want to carry copies of all your previous medical records with you to the appt if you are able to get one with a different doctor!

Good luck!
Lyme Disease, AIH, Hashimoto's, "lupus-like" CTD?, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel, Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP, Darvon, Morphine Sulfate

Regular Member

Date Joined Feb 2010
Total Posts : 138
   Posted 2/19/2010 3:03 AM (GMT -6)   
I understand your frustration. I have the symptoms and the posative bloodwork and still can't get anywhere.

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 2/19/2010 10:30 AM (GMT -6)   
Was this appointment with a rheumatologist?
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta,

Regular Member

Date Joined Dec 2009
Total Posts : 26
   Posted 2/19/2010 11:38 AM (GMT -6)   
Haha!....only the number 1 ranked in the country!!!....they were so arogant it wasn't funny. Idk if I am allowed to say who it is...can I?

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 2/19/2010 12:07 PM (GMT -6)   
hey girl! Sorry about your disappointment! I wouldn't give up, keep searching for someone who takes you seriously. You know yourself better than anyone else and you know when there is something wrong.

No, you can't name a particular doctor when they are giving you poor service. This is because we don't want HW sued!!

Regular Member

Date Joined Dec 2009
Total Posts : 26
   Posted 2/19/2010 5:56 PM (GMT -6)   
I know from reading a bunch of your posts that many of you have gone through the same thing I am right now. I guess I am no different in that respect. I go back to my PCP on Monday and guess I will start this process all over again. This time I will go closer to home...I do not want to make a 3 1/2 trip again to be treated the way I was. Looking back at my appointment now I believe the fact that I am so young had a lot to do with the doctor blowing me off and just telling me I have too much stress in my life and need to get better sleep. Maybe I am the one that is wrong...could stress cause me to have all these symptoms? I guess I will have to see what my doctor thinks about my trip, I do not think she is going to be happy when I tell her what the doctor called her but I feel the need to let her know. There were just so many things about that appointment that I think was wrong.... I thought I was going to the best possible place I could be and look how they treated me...I am hoping that I can find the strength to attempt this for the third time...2 rheumatologists down...hopefully the third time will be it!

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 2/20/2010 10:47 AM (GMT -6)   
I am sorry you had to deal with this. My 2nd rheumy dismissed me too...... keep searching for answers and for another rheumy, hopefully the 3rd one will be a charm like mine! Hang in there and keep us updated. Take care
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid and Tramadol (as needed) and magic mouthwash ( as needed for mouth sores)

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