No Dx....AAAAAAAhhhhhhhh!!...Is this normal?

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Regular Member

Date Joined Apr 2007
Total Posts : 22
   Posted 12/23/2008 4:19 PM (GMT -6)   
So, I have been anxiously awaiting my rheum visit. It came today. The conclusion...."I don't know."

I did make a list of my medical history and my family's medical history. The doctor went over all of it with me. That was cool. He did some examination and found "nothing of concern". He looked at my blood tests and ordered more which included more indepth tests of the ones that came up positive. He also asked where my past medical records were.

I guess all in all it was a productive visit but I am a little disappointed. I was hoping for more. My follow up visit isn't until February 9th!!

He does seem like he's thorough. Is this a typical first time rheum visit?


Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 12/23/2008 4:25 PM (GMT -6)   
Hi Nicole,
Oh man, yeah, I can understand your frustration.  It is normal for your first visit to not get a definitive diagnosis, and lots more tests, etc.  It is very encouraging that this rheumy was taking you seriously. Not rushing you out of the office with more, "Oh, it's all in your head, get over it."  kind of stuff.  So that's good!  Don't get discouraged by this.  It's taking its normal route.  February 9 will be here before you know it.  Some of those specialized blood tests take 2 or more weeks to get back, some of them longer. 
I'm so glad you let us know how it went. It sounds very positive so far!  I hope you enjoy your Christmas and New Years!  You're on the right path, Nicole. The train is movin'!!!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Regular Member

Date Joined Oct 2007
Total Posts : 185
   Posted 12/23/2008 5:48 PM (GMT -6)   
It took almost two years before I was given a DX....

Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 451
   Posted 12/23/2008 6:16 PM (GMT -6)   

Actually, it sounds like you had a very productive first appointment. Like Ginny said, at least he didn't rush you, he listen and ordered further testing. He will want to order more testing and review what medical records he can get a hold of then make a conclusion from there. That is good though, you don't want someone who is going to give you a diagnosis on a whim.

And again, as Ginny said (she's so smart) Feb 9th will be here before you know it, I mean, just think about it, tomorrows Christmas eve, New Years will be here soon and then Februrary will be here in a blink of an eye.

Keep your chin up, you're getting there. The road to a diagnosis is long and slow, but you'll get there!

Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis

Regular Member

Date Joined Aug 2007
Total Posts : 101
   Posted 12/23/2008 6:52 PM (GMT -6)   
Hi Nicole,
I understand how you feel. I saw my new rheumy for the first time yesterday and yup doesn't know what it is but did some more blood tests and xrays and will see him in a month. I know it's frustrating (boy do I know!) but hang in there and that date will be here sooner than you think (I'll count the days off with you!) And they are right;at least the docs didn't kick us out wink
light and love

Regular Member

Date Joined Apr 2007
Total Posts : 22
   Posted 12/23/2008 7:16 PM (GMT -6)   
Thanks ladies! I appreciate your feedback and support. I am going to have to hang in there until February.

Thank you for helping me to go in the office prepared with the things to assist the doctor in Dxing (the med history and fam history). I guess I can work on getting my med records from the doctors he wanted to see them from. I have time to do that.

I honestly don't know if I would be emotionally okay through this process without this forum. Thanks again!


Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 12/23/2008 7:23 PM (GMT -6)   
Hi Nicole, it sounds like you had a very good first visit yeah . It sounds like your doctor is very thorough and listened to you, that is very important. Like the others said it's very rare to get a dx on your first visit with the rheumy. I like to compare a lupus dx to that of putting a puzzle together, you put it together one piece at a time, one visit at a time. I pray it doesn't take too long for you to get a proper dx. Take care and keep us updated.
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 12/23/2008 7:42 PM (GMT -6)   
Only when you exibit several obvious diagnostic criteria and have documentation of the rest needed for a dx would you get an immediate dx. I had 3 of the 11 criteria that were obviously displayed during my first visit and documentation of 2 others so I was immediately dxed and tx started. Unfortunately few people walk into a rheumy's office when so many of the criteria are obviously present. I looked so bad death would have been afraid of me. People would look at me and move as far away as possible by the time I finally saw a rheumy who listened and paid attention. The fact this doctor listened and didn't immediately begin saying it was all in your head or fibromyalgia without anything to back up that dx says a whole lot. Sometimes it can take years of seeing a rheumy to figure it all out. What you look for is some kind of treatment to begin after he sees the test results and other records. A dx isn't necessary if you are treated.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, now cellcept

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 12/23/2008 7:58 PM (GMT -6)   
"I don't know" is an excellent start!!!

Rather than posturing, guessing, or just dismissing you, the guy is willing to admit he doesn't know!! A rare bird, an honest doctor!

If he doesn't know, he won't start with a bunch of preconceptions, but will be able to treat the symptoms and objectively notice and adjust medications/treatments based on how your body responds. *So* much better than a cookie-cutter Dr, especially with autoimmune disease that masquerades as so many other things!

For years I've made it a point to always hire, work with, and work for people who are willing to admit when they don't know -- if everyone knew everything (or said they did) wouldn't the world be a much better place???!


Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 8mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

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