Preparing for first appointment

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New Member

Date Joined Jan 2012
Total Posts : 14
   Posted 1/21/2012 4:26 PM (GMT -6)   
I have been suffering with many different symptoms for a very long time. In the order of appearance they are; hip pain, joint pain in hands, hands turning blue with stress or cold, knee joint pain, ankles, cracking of all joints, bone pain (feels like someone beat me with a hammer), rash, sensitivity to light which causes migraines, numbness and tingling in feet and hands sometimes all the way up to my knees, muscle quivers, chest pain, seizures, hair loss, dry eyes, mouth and girl areas (so dry there that I am starting to get fissures just from normal function). I just had my fourth child and with this pregnancy the symptoms were noticed more (mostly because I was actually under the care of a doctor). I was hospitalized for the chest pains, and seeing "stars". Did many 24 hr stays to monitor my protein levels, which were considered borderline preclampsia, but each stay doctors did not know what was going on. EKG's always came back negative and I refused to go in when I had my seizures. Was told by OB that it was possible lupus but they wanted scans done after I had the baby before doing an ANA. Also spoke with a neurologist who is engaged to my friend and he said that I have lupus but without a formal
clinical diagnosis there was no real way of knowing (he lives in a different state or I would get a referral from him. But I have finally made my appointment with PC to get the ball rolling. I am skeptical about seeing any doctor because I have been misdiagnosed with stuff already, to include bursitis, and celiac. I recieved steroid treatment and physical therapy for the bursitis and it did not help at all, just caused weight gain and lots of lost time. What do I need to say to my doctor to make them take me serious? Any questions I should ask and tests I should be prepared to get done? Also what has everyones experience been with being taken seriously. I am only 26 and have found that does not make them listen very well. The pain is just getting worse and it's to the point that today I can't even walk.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 1/21/2012 5:33 PM (GMT -6)   
Make a list of your symptoms. If you have any swelling or rashes take pictures.
Be prepare for a lot of bloodwork. Depending on your rheumy you may under go MRI, MRA, CAT scan, sonagrams, and xrays.

New Member

Date Joined Jan 2012
Total Posts : 14
   Posted 1/21/2012 5:49 PM (GMT -6)   
I knew I would probably be getting an MRI and a CAT just from what my OB told me.

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 1/21/2012 6:13 PM (GMT -6)   
Check out the Lupus Resources thread from the link in my signature. You'll find many hints on how to prepare for a doctor visit.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Regular Member

Date Joined Jan 2012
Total Posts : 135
   Posted 1/22/2012 12:55 AM (GMT -6)   
I cannot believe they didn't do an ANA right off the bat! But..I too went thru this! My last pregnancy triggered the symptoms & I kept telling my OB but he said "No your fine! You have a textbook pregnancy!" Id like him to go thru agony while preg, caring for a 2 yo and working full-time! That was my worse time ever!
I needed to be MORE FORCEFUL & demand tests. I later did this but by that time I was where u stand now. Here is my advice to you: There are many factors involved in diagnosing Connective Tissue Disease (Lupus, RA, MCTD) so... 1) get a referral immediately bc once u actually get in it'll likely take a few appts to get dx. Don't give up! 2) Ask for meds! (You are in pain & need meds - impress upon your Dr the sheer Magnitude of the pain! (They wont know if u do not be verrrry clear!) 3) you may even want to consider antidepressant that helps w pain - CYMBALTA has helped me a ton but I hear Celexa & Paxil seem to help too.
4) you are not in this alone! We are all here for you & have been thru it! Hugs to u amiga!
age 41, Mom of 2 great kids (10 & 7)
MCTD(LUPUS), RAYNAUDS, FIBROMYALGIA, L4L5 disc herniation, fracture in L3 fro EPIDURAL in childbirth
Meds: Arava, prednisone, Nifedipine, estropipate, cyclobenzaprine, Cymbalta, sulfasalazine, gabapentin, hydrocod, fentanyl patch, methotrexate - MTX (on hold), minocycline, clonaxepam (sleep), vit D, PRILOSEC, Transderm Scopalamine, Vit Bcomplex

New Member

Date Joined Jan 2012
Total Posts : 14
   Posted 1/22/2012 11:20 AM (GMT -6)   
Thank you! I went through all my symptoms last night at wrote them down and realized that with each pregnancy the symptoms got worse during the pregnancy and stayed after. here is what I came up with last night after actually sitting down and going through it.

*chest pain-tightness when breathing lasting 1-3 min, not a symptom I have all the time
*hip pain 6/10 pain level on good days 8/10 on bad
*Knee pain " "
*ankle pain " "
* popping and cracking of all joints
*numbness and tingling of hands/feet
*blue fingertips (extending to knuckles)
*sensitivity to light, sun
* dry eyes, mouth and vaginal area (to the point I get fissures from regular movement)
*constant itching, happens in spurts
*puffy like rashes on my neck and chest, appear to be itchy but really don't
*pain lower left side abd. (have been told it is pain from scar tissue from where my spleen enlarged twice it's size during mono as a kid)
*occasional pain lower left back on each side
*hair loss (spend more time picking hair off of me in the shower than actually showering)
*pizza burn like patches on the roof of my mouth, they don't hurt but have that smooth burnt like feel to them
*constant knot on top of head (I know this is hereditary and probably not related, it develops around this age for everyone in family)
*forgetfullness (constantly repeating myself)
* muscle spasms

and also when I was pregnant my protein levels was 273, high but not considered pre-e

This is what I have to take with me

New Member

Date Joined Jan 2012
Total Posts : 14
   Posted 1/22/2012 11:23 AM (GMT -6)   
Oh I should also point out that I lost an inch in height with this pregnancy and had to get three epidurals and finally they figured out that my spine had a curve in it that was not there prior to the pregnancy.
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