My Rheumy Appt

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Lord_Walters_Lady_Bug<3
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Date Joined Oct 2008
Total Posts : 257
   Posted 5/23/2009 1:06 PM (GMT -7)   
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*
*Wifey & Mommy*


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 5/23/2009 2:54 PM (GMT -7)   
Wow Mommy, great report! Sounds like you have found the dream rheumy - smart, thorough, and she has a bedside manner to boot! What more could a person ask for. I know you're anxious to get the results and start treatment and my money's on the fact that she will have you feeling better sooner rather than later. Is Johns Hopkins far from you? I hope not!

Thanks for sharing.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 5/23/2009 2:54 PM (GMT -7)   
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.

Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 5/28/2009 2:12 PM (GMT -7)   
Hey thank you all for the support :) Yes its been rough...been feeling real bad since sept of 08 but had symptoms on and off for 6 years now...really my whole life. Anyhow, we are finally getting somewhere. I am still waiting for the rest of the bloodwork to come back and I get an MRI tuesday with contrast dye and the ultrasound of my heart thursday. I may also get xrays done of my pelvis etc but my pcp was a little leary about wanting to shoot all that radiation into my ovaries. I cant blame him. He said if the MRI comes back abnormal well do the xrays. I also have to get a EMG nerve test done on both arms and legs. I had one done on my legs a while back and ugh they hurt! Not sure when that will be. Other than that its a waiting game and Im hoping things come back so that I can start treatment my next appt June 25th. Johns Hopkins is actually 3 1/2 hours from me but if I say with my dad in delaware it is only 2. It is worth it though I wish there were more drs out there like mine. She is going to see what symptoms are being caused by autoimmune and what aren't and treat them both. Now its just another waiting game. I hope everyone is well. I know I flare every month and the last two have lasted a month long so I only have a few days out of each month where i actually feel good. Take care and thanks again for being there :) *hugs* -Brittanee
*Wifey & Mommy*


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 5/30/2009 8:10 PM (GMT -7)   
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
*Wifey & Mommy*


Debbie Downer
Regular Member


Date Joined May 2009
Total Posts : 62
   Posted 5/31/2009 5:35 PM (GMT -7)   
That's a fantastic doctor!! I hope my Rheumotologist takes me that seriously. I would love it if they would test for everything all at once and get it over with. I don't know why some dr's are so squeamish about tests. Isn't that what we pay insuarance premiums for? Good luck with your diagnosis.

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 5/31/2009 7:15 PM (GMT -7)   

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


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 6/2/2009 1:26 PM (GMT -7)   
Thanks to you both and yes I am very glad to have the dr I have! She wont even stamp me with UTCD until we know more..it sucks but oh well...well see what kind of treatment I can get my next appt.

P.S. Lucy, what was your ANA and titer? My first one was 1/160 speckled and the second within a week of that was high at 243.
*Wifey & Mommy*


lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 6/2/2009 2:05 PM (GMT -7)   
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
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


Debbie Downer
Regular Member


Date Joined May 2009
Total Posts : 62
   Posted 6/2/2009 2:19 PM (GMT -7)   
My first ANA was 1:320. My PCP said that it was probably false because the anti DNA and another lupus specific test were negative. I don't understand that really because you would think with my other symptoms than she would not automatically assume it was false. It could be something besides Lupus. I asked her what the pattern was and she said there was none and that it was false. I've looked that up and I have no idea how there could not be one. Confused?? Anyhow, I have seen an endocrinologist because my sister has Addison's disease and they wanted to check for that. My thyroid levels checked out okay, but the doctor said my thyroid felt rough which happens when the body attacks it and suggested auto immune. I am seeing my Rheumotologist on June 25th. I wonder what my PCP will say if my ANA is positive again. I am envious of your doctor. I wish my PCP was more interested in exploring my symptoms instead of labeling me depressed ((( which I am not ruling out))) She sees that I had a baby 11 months ago and says Postpartum without any hesitation. However, I've read that pregnancy can cause auto immune disease to become active and a lot of women start having symptoms in their child bearing years.

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/2/2009 2:23 PM (GMT -7)   
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.


Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009
 
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid

Post Edited (dbab) : 6/2/2009 3:26:21 PM (GMT-6)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 6/2/2009 5:06 PM (GMT -7)   
More specific info on what your ANA test might mean:

The homogeneous (smooth) pattern is found in a variety of connective tissue diseases as well as in patients taking particular drugs such as certain anti-arrhythmics, anti-convulsants or anti-hypertensives. This pattern is also the pattern that is most commonly seen in healthy individuals who have positive ANA tests.

The speckled pattern is found in SLE and other connective tissue diseases, while the peripheral (or rim) pattern is found almost exclusively in SLE. The nucleolar pattern is found primarily in patients who have scleroderma.
Lynnwood, Co-Moderator: Lupus Forum
Life is far too important to be taken seriously. - Oscar Wilde, 1882


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 6/3/2009 1:55 PM (GMT -7)   
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
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 6/4/2009 10:45 AM (GMT -7)   

OK - sort of answered my own question after doing a little research.   Hope it helps others who might be wondering.

The Anti-Nuclear Antibody (ANA) Test

by Richard Silver, M.D., Professor of Medicine, Medical University of South Carolina (originally published in "Scleroderma Voice," 2002 Issue #1)

Question: When you have a positive ANA titer (concentration), can the pattern change, and if so, what does this mean? Is the pattern of the titer indicative of the disease you could develop?

VIEW IMAGE

Richard Silver, M.D.

Answer: Both the pattern and the titer (concentration) may change, and certain patterns are indicative of specific autoimmune diseases.

For example, the anti-centromere and the anti-nucleolar patterns are fairly specific for scleroderma, but other patterns such as the speckled pattern may be seen in both scleroderma and other connective-tissue diseases.

Generally, the ANA test is used by the rheumatologist to help support or refute a clinical impression; neither the pattern nor the titer is used to monitor the course of disease. Changes in pattern and titer are relatively insensitive, and therefore not very useful for the clinician.

 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 6/4/2009 2:07 PM (GMT -7)   
Wow. thank you all so much for the info. I honestly believe this is something autoimmune as well and really lupus or MCTD or UTCD etc. I thought I was feeling better but the tingly hadn't gone away this week and last night my legs were hurting horribly and burned and ached and you could feel the pressure and numbness and I was up till 2am when I practically passed out because I was so exhausted and had cried so much. 3 ibuprofen does nothing. Today I am checking my email at the library and they have fluorescent lighting and I am getting a rash on my face..first one in like a week..im hoping this isn't another flare so soon but you never know..not a good sign anyway. Hope you all are feeling well and thanks so much again! *hugs* -Britt
*Wifey & Mommy*

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