Frustrated waiting for a diagnoses...

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His Lobster
New Member


Date Joined Sep 2009
Total Posts : 16
   Posted 9/16/2009 8:38 PM (GMT -7)   
Hi gang, I'm new and have some questions that hopefully someone out there might be able to provide answers to (in addition, a little venting to do rolleyes ) ... 
A little background first;
I'm almost 38, female, have 3 kids, and my grandmother was diagnosed (back in the day) with Fibromyalgia as well as exzema (maybe it was actually PA?), and my grandfather suffers from gout and Parkinson's (parents seem to be somewhat healthy without any specific issues).
 
I went to the doctor (as a new patient due to a move) three weeks ago for a follow-up appt. for a swollen gland.  The Urgent Care doc that saw me for that gave me the mother of all steroids (can't remember the name of it now) and while on it, I had two!! great, pain free days with fabulous sleep.  Anyway, back to the follow-up appt.  I started mentioning some of the pain I have been having for months (I'm realizing now after research that some of this has been going on for 10+ years and I just wrote it off as something like "Oh, I probably just slept wrong) and he started looking at my back and hips.  He told me that he could see the swelling and feel the spasms...huh? go figure.  He said he was thinking it might be arthritis (which I had in the back of my mind) and ordered x-rays and blood work and gave me scrip. for Naproxen.  The results of the x-rays say that I have arthritis in my neck and lower back (all the places x-rayed), but the blood work, which I was negligent in noting what tests were being done on) came back fine except the rh factor because the lab didn't do it!  It was a miscommunication somewhere but that's besides the point, supposedly it's going to be ran-I haven't been told that I have to go back in....All I've been told (all over the phone) is that I have arthritis (still waiting for a specific).  No "come back in and we'll talk about the various types, what your options are, referring to a rhuematist..." nothing, just take this and if it doesn't help, come back in and we'll give you something else.  Now, this is the nurse calling, not the doc or pa who the appt. was with and who I feel took adequate time in listening and examining etc... I'm going nuts not knowing what I have and what I should be doing about it!! shocked
My questions have to do with the pain and types of arthritis out there.  After reading about the many types of arthritis out there, it seems like I have symptoms of at a minimum of 3...can you have more than one variety of arthritis?  Also, I have a recurring "rash" on the T-zone of my face that peels incessantly, occassionally burns, and then goes away.  I'm not sure if this is stress or a symptom of PA.  I didn't bring it up to the doc at my appt. because it wasn't flaring up at the time, but now it is and I've been trying to educate myself (or more accurately put; scaring the crap out of myself reading on the internet) and I'm thinking it fits with all the rest of this stuff going on...
I could give you a list of the kinds of pain that I experience in all the various places of my body (because it's different depending on where the epicenter of the pain is), but seriously, the list would be so long and this post is already so lengthy I'm afraid no one will read it! LOL
Anyone have some clue as to what type of arthritis I might have, and advice on what I can/should do while I'm waiting?

marshal ipkek
New Member


Date Joined Sep 2009
Total Posts : 3
   Posted 9/18/2009 7:40 AM (GMT -7)   
The rash on the t-zone of your face - is it a butterfly shape across your nose and down onto your cheeks? It sounds like Lupus if it is - which causes arthritis as well. The rash is the indicator for Lupus. I have tested positive for the ANA - anti nucleic antibody test that I think they are talking about testing you for. It indicates that you either have RA or Lupus - my Dr. still doesn't know which I have as I have never had the rash (which flares up and goes away as you describe). You should definately mention the rash to your Doc - and he/she should refer you right on to a rheumetologist to get the care you need. Good luck, and hope you feel better.

His Lobster
New Member


Date Joined Sep 2009
Total Posts : 16
   Posted 9/18/2009 9:45 AM (GMT -7)   
Having never seen a "butterfly rash" it's hard for me to know for sure, but I'm going to say no it's not.  The stinging, burning, peeling is contained to my eye brows, the corners of my nose, the "crease" area of my mouth/cheeks, and chin.  Even when it comes and goes, it's almost present 90% of the time in the corners of my nose even if it's only a little bit...
Since my gp's office still hasn't called me back about the blood test or returned my phone call from 3 days ago, I went ahead and made an appt. with a rheumy (I don't need a referral w/our insurance-which is nice!) for the 29th of this month.  Only a week and a half away versus middle of October and November for some other docs and locations! 
Good luck Marshal on your situation as well, keep me posted and I'll do the same. :-)
Migraines since the early 90's (Imitrex & {previously}Topomax) ~ Arthritis diagnosed Sept. 2009 (waiting for more specific diagnoses-rhuemy appt. on the 29th).
 
"By wisdom a house is built, and by understanding it is established; and by knowledge
the rooms are filled with all precious and pleasant riches." ~Proverbs 24:3-4
 
"But friendship is precious, not only in the shade, but in the sunshine of life, and thanks to a benevolent arrangement the greater part of life is sunshine." ~Thomas Jefferson
 
We Were Homeschooled:
George Washington, Thomas Jefferson, James Madison, John Quincy Adams, Abraham Lincoln, William Henry Harrison, Theodore F. Roosevelt, Mark Twain, George Bernard Shaw, Irving Berlin,
Charles Dickens, C.S. Lewis,
Abigail Adams, Martha Washington, Florence Nightingale,
Agatha Christie, Rembrandt Peale, Claude Money, Ansel Adams, Blaise Pascal,
Booker T. Washington, Thomas Edison, Benjamin Franklin, Andrew Carnegie, Felix Mendelssohn,
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SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 9/18/2009 7:41 PM (GMT -7)   
Im surprised you were n't referred to a Rheumy by your Dr. after he confirmed you had arthritis. Good on you for making your own appt. with a Rheumy though.
Make sure you are armed with a list of your symptoms so you can discuss med options. Hopefully the Rheumy will put you on the right track for remission with the appropriate meds. Keep us posted on your progress and good luck for your Rheumy appt. on the 29th.
Jo
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone

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