My Rheumy Appt

Hello all. As Im sure you know you have heard about my appts with rheumys and failed attempts at a diagnosis or treatment. I saw a new rheumy last thursday at Johns Hopkins in Baltimore MD. My appt thursday went well. I love my dr. She is so sweet and even said "your symptoms are very real and I think we need to look into this." They dont want to put a stamp on what I have or say it could be this or couldn't be they just want tests done first. My symptoms can be seen in autoimmune but are not specific. They ordered a blood workup which included: CBC w/diff & platelets, CMP, ESR, CPK, CRP, Tsh and Tr(thyroid), Complete urinalysis and also protein and creatine, ANA, ANCA, Anticardiolipids, AntiDNA, AntiRNP, AntiSSA & SSB, Complements 3 & 4, Hepatitis C immuno., Lymes, an RA panel, Beta 2 glyco. IGG and IGM and the lupus Anticoagulant. I got that done thursday after the appt and should know something next week around monday or tuesday. I am also getting an MRI of my brain and spine, an xray of my lower back and hips, an echo on my heart, nerve conduction studies of both legs and arms. I feel like I am forgetting something lol Anyway, she told me not to worry that it was her job and go home and spend what time I have with my son. She said she is sorry I have had to feel so bad for so long but she is going to figure out what's going on. I feel the appt was a success and am not even worried that they wont treat me till they know what is up. She gave me her email and phone number and said call or email her whenever I want if I have a question or need someone to talk to. I have been wondering why I am so special lol I mean does she always get this personal to her patients? lol I dont mind it a bit im just curious. I really dont know what to expect out of these tests except that I know something is wrong and so does she. Thats what mattered most to me because no other dr would admit that. I have to go back in a month for a followup but like I said she will get in touch with me about blood work sooner. At least that will be one piece of the puzzle. She is testing for lupus, RA, sjogrens, vasculitis, lymes, and even thyroid disease. She wants to see me back in a month for a follow-up and in the meantime have all these tests done. I think I am finally on the road to wellness. Keep me in your prayers and I hope you all are doing well!! *hugs*

It sounds like you have found a good rhuemy. Mine is in Rockville MD and I love her. I have never left her office without her reminding me to call her if I don't feel well or if I need anything.
I have begun to think that that is what doctors are supposed to be like and get really annoyed with the ones that aren't.
Anyway, I hope that you find out what is wrong soon. That time waiting for a diagnosis is awfull.

Ok...I heard back from my dr and my ana was negative this time! Everything was normal except my CPK. Apparently it was elevated back in march as well but no one ever told me. A normal reading is between 50-100 and mine was 277 back in march and 352 this time with the tests done at hopkins. My dr wants to do more specialized antibody testing when I go back in june to check other parts of the cells since the ana only tests the cell nucleus. I also am getting treated either way when I go back but what these tests show will determine what type of treatment we will start. She said she can only say it is a pain syndrome at the moment because we dont have enough proof of whether it is even autoimmune or not. I will not just be treated with a narcotic which I am glad of. She said some people come to her like me with symptoms and non-specific tests and go on to develop lupus or something like it and some dont. So its watching and waiting some more :/ I am not really thrilled about this but what can i do? lol I just hope we can get something figured out soon. If anyone has been through this or has any comments etc please let me know! Oh and my muscle strength is fine so were not even sure if the CPK is signifying actual muscle damage or not. Hope everyone is well. *Hugs* -Brittanee

I've been seeing my rheumy for 2 yrs - the only positive lab test being the ANA.  Right now I still have the UCTD diagnosis, but she continues to test every six months for RA, Lupus, and others.  She Rxd Plaquenil  6 mos. ago, which has helped with some of my symptoms.  The ANA had remained positive for 18 mos, but we are due to test it again for the first time after being on the Plaquenil.... I'm curious about whether it will have changed or even turned into a negative result. 

The diagnositic "limbo" period is not fun - but this forum helped immensely with perspective in dealing with it.

Good luck! - Lucy

My first ANA was 1:320.  10 mos. later it doubled to 1:640, and then 6 mos. later to 1:1280.  I think the last one was 1:640 in Nov.(when I was actually feeling worse than ever).    Started Plaquenil in Dec.  Am curious if it will have gone down further, however, I believe the ANA's fluctuate enough that they don't necessarily reflect disease activity.  I have a friend who's had Lupus for years and she said her rheumy never checks the ANA anymore - says that once it's significantly positive, there's no need to.    I don't know how correct that is....my rheumy seems to repeat all that bloodwork on a regular basis.  Waiting for something else to "land" I 'spect.

The patterns have been, respectively, Nucleolar and Homogenous initially, then just Homogenous, then Nucleolar and Speckled.  My rheumy doesn't find that to be especially helpful diagnostically.  I have a follow-up appt towards the end of this month - will see what, if anything has changed.

I'm not sure what your second number (243) reflects? 

Lucy

I can tell you that the ANA at 243 is a ANA direct test result (exclusive to LabCorp). I had that one done the last time too and it was in the 400's (I don't remember the exact number). The way I understand it is the ANA direct test measures the autoantigen ENAs as a direct number and correlates that into your ANA. You may find specifics if you google ANA direct Labcorp. There is not much info out there. I know for sure that anything over 120 is positive, and in between 100-120 is equivocal.

The ANA pattern speckled and homogenous from what I understand are the least specific stain patterns, unfortunately it won't point to much. There are other patterns that are more specific.

Thanks for that info Lynnwood - I got curious and looked back at my last record.  It shows the pattern to be both nucleolar and speckled the last two times (1 yr period).

Just wondering if it is a common result to have  more than one pattern on the same test, and a variety of 3 or more over a longer period of test results?   And/or do they fluctuate like the ANA?   Am I making any sense?  It's a foggy day.

Anyone? 

Thanks- Lucy