Saw the doctor today

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Regular Member

Date Joined Jun 2007
Total Posts : 40
   Posted 2/19/2008 2:19 PM (GMT -6)   
This is what my old labs done 10/20/05 and 12/28/05 were:
ANA 1:1280
Pattern: Homo
reference for the 3 ENA is <20
ENA SSA: 123
Starting Mid-2006 labs all normal. They are still normal AAARGH!!! The Rheumy was great she really listened and believed me that I was in pain WOW!! That is new :) But she does not want to treat me as if I have sjogren's or MCTD because of the negative labs for so long. She said I was a confusing case because I fit a fibro diagnosis except no tenderness in any of the 19 spots. She does want to treat my pain with skelaxin and lyrica. I took Lyrica before and it made me sleepy but at this point I am willing to try anything to feel even 1% like I am 31 yrs old and not feel like I am 80 yrs old. She said if I do not get relief from these 2 meds she wants me to see a pain management doc. She said without positive labs she does not feel comfortable treating me with pain meds. I am happy she understood me and believed my pain is real but Why can't my labs scientifically prove how I feel. It is so frustrating.
Did anyone else ever go through this during the early years of their disease? Should I look somewhere else?

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

Regular Member

Date Joined Apr 2007
Total Posts : 39
   Posted 2/19/2008 5:06 PM (GMT -6)   

Hi Kasey,

Most of my (blood) labs were negative in the beginning and even now (after diagnosis) they are borderline or up and down.  My biopsies were positive as well as some scans and some other tests.  My rheumy saw everything that was happening to me and did the wait and see thing. The longer he waited the more stuff that happened to me, so my advice is stick with you rheumy and try to be patient.. I know....I mean I really know how hard that is to do but it will present itself eventually.  In the meantime see that your pain is treated and you do the best you can to feel better right now. 

Good Luck :-)  

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 2/20/2008 6:42 AM (GMT -6)   
Thank you Catzz I will do that. I have finally found a professional, well educated, and compassionate Rheumy so I will stick with her. My first Rheumy was like her but he was so busy that if I became sick or needed to see him they would have an appt 6 weeks out or would tell me to see PCP and PCP would tell me to go to ER. I know he was good but I did not feel with him being so busy that I could get the care I needed.
I pray everyone else out their still searching for a good Rheumy will find the doc they deserve too.
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 2005
Total Posts : 5403
   Posted 2/20/2008 6:19 PM (GMT -6)   
I hope the meds help some with your symptoms. The only thing that makes me question what's going on is that I thought having having the trigger points (tender spots) was one of the main ways to diagnose fibro. I'm glad you like your rheumy - it's always a relief to have a doc that you feel like listens to you.

Take care and keep us updated on how you are doing.
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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