new and waiting on diagnosis

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New Member

Date Joined Jul 2011
Total Posts : 5
   Posted 7/16/2011 4:36 PM (GMT -6)   
Over the past 3 - 4 years I have had episodes of extreme fatigue that come and go.  I have been diagnosed with nocturnal epilepsy, depression, and degenerative disk disease.  After being referred to physical therapy for upper back and shoulder pain last fall, I asked for some lab work to be done.  My primary doctors office called to tell me that my lab results were normal.  That was in October of last year.  Recently, I requested a copy of those lab reports because of my ongoing health problems.  It showed:  ANA 1:640, homogonous; RBC low at 3.98, lymph % low at 18.6, BUN low at 5; and previous lab reports continue to show an elevated thyroid stimulating immunoglobulin. 
So I saw my primary doctor this week, and he blew off everything.  Only because of my persistance did he order more labwork and refer me for some tests - EKG, Echo, Chest x-ray, and an upper GI scope.  My sed rate was normal at 10.  My RBC and lymph % are still low, my albumin was high.  Still waiting on result of all other tests, and waiting to have the scope done.
According to the 11 criteria listed for lupus diagnosis, I see that I meet 3 definite and 2 possible criteria - neurologic disorder (seizures and depression), low blood counts (red blood cell and lymph%), positive ANA at 1:640 and homogonous.  As for the 2 possible ones - I don't have any problems with my peripheral joints, but my sacroiliac joints are swolen and painful and the knots can be felt by someone rubbing my back, and my shoulders ache and hurt - both of those have been issues for several years and all my doctor has done is send me to physical therapy which didn't really help.  The second is the "other positive blood tests that indicate autoimmune disease" - I don't know if the Thyroid stimulating immunoglobulin counts... it is an autoimmune issue where my thyroid is attacking itself.
I also had shingles last year, which is autoimmune.
After doing research, I am wondering if I should ask for/push for a rheumatologist referrel...???
Thanks for any help or suggestions.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 7/16/2011 4:55 PM (GMT -6)   
I'd try to get to see a rheumatologist.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 7/16/2011 6:12 PM (GMT -6)   
No doctor should be dismissing a ANA of 1:640, it does indicate that some sort of auto-immune disorder may be contributing to your issues. Since rheumies are the Drs who specialize in those disorders, I'd try to get a referral.

Based on your country & insurance, you may be able to visit one on your own. One way to find a doc interested in and knowledgeable about lupus is to visit and find the chapter closest to you. Once you find them, give them a call and ask which local doctors are active in the organization. While they won't give you a recommendation for a specific rheumy, at least you will know which ones are up to date on Lupus.

Hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

New Member

Date Joined Jul 2011
Total Posts : 5
   Posted 7/16/2011 6:17 PM (GMT -6)   
Thank you both for your replies, it helps a lot. I was second guessing myself - wondering if I was making too big an issue out of it. I will be looking for a rheumatologist soon! Thanks :)

Regular Member

Date Joined Jan 2006
Total Posts : 395
   Posted 7/17/2011 7:28 AM (GMT -6)   
Hi! and welcome,
I am so glad you found us. You need a rheumy asap and shame on your dr. for blowing off your abnormal lab work. I second guessed myself for 5 years, too. You should be proud of yourself for asking for copies of your labs and listening to what your body was telling you. I wrote a Misery Log for 5 yrs, and used the 1-10 scale to keep my subjective misery as objective as possible. I kept a notebook of every test, every study, and a calendar to document patterns in my neuro symptoms. When I had to apply for SSD retirement, that notebook and calendar was a blessing. Keep pushing and keep posting,
ps. if you find a few rheumys close enough to where you live, make a few calls, and ask to speak to the office nurse, (you don't even need to give your name, just explain you are trying to find a dr. who takes care of patients with lupus). Ask her/him if "their" doctor sees alot of people with autoimmune illnes and are accepting new patients/your type of insurance and you should be able to get a feeling for whether that dr. is someone you'd like to see. Don't ever hesitate to be an advocate for yourself. Take notes as you speak of names, times, and questions. Don't hesitate, if your budget allows, to make an appt. for a consult.

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis, Degenerative Osteoarthritis, Asthma
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. (20-40mg prn), Vit. B12 2400 mcgs, Vit D 1000U and Ambien every night. Advair, Albuterol and DuoNeb inhalers.
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