how did you get diagnosed?

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poohbear37
Regular Member


Date Joined Feb 2007
Total Posts : 98
   Posted 10/22/2007 4:41 PM (GMT -7)   
Does anyone remember what blood tests they had to help determine your lupus diagnoses? I am getting so much different feedback from different doctors and am feeling really frustrated. I know that autoimmune diseases are not easily diagnosable, but this process is making me feel crazy and like they don't believe my symptoms. Thank you!
~*~Kristyn~*~
Age - 24
Diagnosed w/UC at age 18
Fibromyalgia & Chronic Fatigue at age 16
Acid Reflux & Drug Induced Lupus 10/07 (from Remicade)
Current Meds - Asacol (12 pills daily)
-Nexium 40mg/day
-Canasa suppository (1000mg at bedtime)
-Lexapro (10mg)
-Prednisone (40mg when flaring)
-Multivitamin, Aloe Vera Gel


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/22/2007 5:12 PM (GMT -7)   
Hi Krstyn . . . welcome to the forum.

I see in your signature hat you were dx'd with Drug Induced Lupus recently. Sorry you are having so many problems. It seems that between the disease process and the meds it causes a domino affect and its hard to tell what's causing what. I imagine that you wondering if it is really drug induced lupus or life-long lupus. I really hope it is actually the drug induced. The doc can do certain blood work that gives a clear indicator if the lupus is drug induced. When the offending drug is removed, the lupus goes away. SLE can be harder to dx and it can take several doctors and many years to figure it out, especially when you have overlapping AI disease like you do.

Don't let them make you feel crazy. Maintain your confidence and keep looking till you find a doctor who will listen to you and work with you. At best, it is difficult even for a doc who is on the ball. If you look in "Lupus Resources" (link in my signature) there is an outline for a cheat sheet for doctor visits. I highly recommend that you prepare one of these on your computer and spend a couple of weeks working on the information and symptoms part. Keep the sheet updated and ready for each doctor visit. When you hand your sheet to the doctor, they can quickly look over your situation and use the office time to figure things out. I've found it very helpful except with one doctor (who was the first doctor and who thought this was all my head). The other doctors love it and they put the sheet right in their file. There is also a post in that topic with tips for new members . . . well worth the read.

Hang on . . . eventually one of your docs will figure things out. BTW . . . a rheumatologist would be the best doctor to see if you think you have lupus.

I hope you'll keep us updated!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4392
   Posted 10/22/2007 5:20 PM (GMT -7)   
While I don't officially have a diagnosis of Lupus, I do have a diagnosis of Undifferentiated Connective Tissue Disorder, and they tell me it is a "Lupus-like Syndrome."  The tests are the ANA (anti-nuclear antibody), along with the panel of specific antibodies such as anti-DSDNA, SSA, SSB, etc.  Also, a Complete Blood Count with Differential, Erythrocyte Sedimentation Rate (ESR), C-Reactive Protein (CRP), Anti-Phospholipid Antibody (APA) screen, Complements, etc., are helpful for seeing if a person has the blood abnormalities common to Lupus (such as low WBC or Lymphocyte count, high ESR, normal CRP, any APA's, low Complement levels, etc.).
 
Drug-induced Lupus doesn't typically have any of the specific ANA antibodies, but usually goes away after awhile if the drug that caused it is stopped.
 
What I've heard others suggest is to print out a list of the 11 criteria for Lupus and take it to your doctor.  Discuss each of the criteria and how each one does or does not match your symptoms.  This, along with your blood test results, should help clarify things for you I hope.  Here's a link to the 11 criteria:  http://lupus.org/education/diagnosis.html
 
Take care,
 
 
-Razzle
Gluten & Sulfite Sensitivity, Multiple Food & Inhalant Allergies, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, malabsorption/malnutrition, etc.
Meds:  Pulmicort, Claritin, Injectable Vitamin B12, Herbs, Nutritional Supplements, Essential Oils, Homeopathy.


poohbear37
Regular Member


Date Joined Feb 2007
Total Posts : 98
   Posted 10/22/2007 5:28 PM (GMT -7)   
Thank you so much for your quick replies. I just had my first appt with a rheumotoligist. He did more specific blood tests what he called a "lupus panel" my GP is the one who tested my ANA and thought i had drug induced lupus after finding swollen lymph nodes and having months of low grade fever, fatigue and joint pain. I also had a positive ANA (although i guess you can have that regardless of if you actually have symtoms). Anyways, i just felt that the Rheum didnt fully believe me and kept asking me if i thought i was depressed. Its so hard..part of me wants the tests to come back so i have an explanation, and people wont think im making this up and part of me just wants everything to be fine. Thanks again.
~*~Kristyn~*~
Age - 24
Diagnosed w/UC at age 18
Fibromyalgia & Chronic Fatigue at age 16
Acid Reflux & Drug Induced Lupus 10/07 (from Remicade)
Current Meds - Asacol (12 pills daily)
-Nexium 40mg/day
-Canasa suppository (1000mg at bedtime)
-Lexapro (10mg)
-Prednisone (40mg when flaring)
-Multivitamin, Aloe Vera Gel


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/22/2007 5:35 PM (GMT -7)   
Hi Kristyn,

My rheumy keep an eye on depression too. It is WAY common with chronic illness and they like to treat it before it really gets out of hand. Depression can add to your fatigue and treating it can really help your overall sense of well-being. If you look at the meds in member's signatures, you'll see that most of us DO take an anti-depressant and MOST of us argued about it and dragged out feet for a long time before relenting to another med. For me it was my first rx med and even by itself was very beneficial. I hope your rheumy will gain good info from your blood work . . . but positive blood work is only one criterea for diagnoses. If you look at the criterea for dx, you need 4 from a list of 11. Razzle gave you a good link to see the list.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Staceymommy
Regular Member


Date Joined Oct 2007
Total Posts : 24
   Posted 10/22/2007 6:34 PM (GMT -7)   
When I was first dx it was during my tenth miscarriage. They ran a Lupus panel and found out I have Lupus and Hughes

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/22/2007 7:06 PM (GMT -7)   
Wow Stacey, I don't know what to say to that. I've had one miscarriage and I thought it would kill me. I'm so glad you're a mommy now. How bad is your lupus?
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/22/2007 7:40 PM (GMT -7)   
((((((((Stacey))))))) . . . I'm glad to learn that you finally have a healthy baby girl!! There are some others here who have had many miscarriages too. So sad.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Staceymommy
Regular Member


Date Joined Oct 2007
Total Posts : 24
   Posted 10/23/2007 1:08 PM (GMT -7)   
It has gotten worse since 2002 when I had my son. I don't seem seem to have remission times. Either that or it's the fact that I have ignorant docs that haven't found the right combination of meds. Have found a bit more help on my own researching herbal stuff. The past week has been the best I've had in atleast 2 years.
dx Aug 2001 SLE and Hughes, 2003 Chrondromalaysia patella, Hashimoto and IBS, 1995 Gerd and Osteo Arthritis, 2004 Migraines, Chronic Bronchitis, Sinus Tachycardia, 2006 Fibromyalgia

Married 9 1/2 years
Mom to 1 miracle boy born 11/10/02 (took 12 pregnancies)
Meds
Darvocet
Toradol
Prevacid
Toprol
Vistaril
Prednisone(during flares)
Albuterol Nebulizer

Supplements
One a day
Ho shou wu(helps with the infamation and break through pain)
peppermint and green teas
Primrose oil
chaste berry


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/25/2007 2:36 AM (GMT -7)   
Hi Kristyn, I'm sorry you are having such a time of it. I know what you mean by they don't beleive ya or something. I told my doctor I was a widow and he said well ok I can't tell if you have fatique because your depressed or depressed because you have fatique! I want the emoticon that beats it's head against the wall. One doctor says lupus and one says cirrosis. I'll just let them take the gloves off and fight it out for themselves!

Good luck to you
carol
God Bless
Carol
Primary Biliary Cirrosis,  COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


aggscott
Regular Member


Date Joined Oct 2007
Total Posts : 35
   Posted 10/25/2007 3:59 AM (GMT -7)   

I met the doctor I see now, the Rhumey I have now finally DX'ed me. Sometimes when you have a problem when I go and you have to call your regular doctor you see another one if your doc isn't in that day..Everytime I saw a different doctor they would question my labs and ask me if I ever heard of Lupus...I must have heard that about five-six times...So everytime they would send me to a Rhumey, but not the one I am currently seeing. Boy, have I seen some beauty ones too!

One was suppose to be this big time great Rhumey right so I make an appointment and I travel an hour and half to see him..well I'm going to find out what's wrong with me-um....no...he was the most rude, the most mean doctor I have ever met! When he came in he didn't say a thing, just sat down. Then he come over and starts pokin, prodding, does this hurt? how about this? Do you have this? How about this? No hi, how are you, nothing..So he sits and starts typing on the computer-still not a word(it's like there not human sometimes.)After about 10 minutes of sitting there all uncomfortable he gets up and says, you don't have Lupus, I don't need to see you again and left the room. How about that for a human! I started to cry, I just had it..He saw me in the hall crying and just walked right by...so mean..

Fast forward about a year and another doctor I saw said you better get checked for Lupus, you have all the symtoms..I told that  one that I would never go again, Rhumey's were the worst doctors' I have ever met! She set me up with the one I currently go to who is a doll. She is from Poland and can be hard to understand to some but for me, I hear every word she says..She comes in and asks how your doing, shakes your hand. She doesn't touch the computer until she listened to how you are and if anything is wrong. The other thing she does that to me made a difference is she walks you out to the waiting room. Just talks to you all the way out..She also likes to hand out info on what you talked about that day. The last time I was there, I got a stack of papers on all the different meds I might have to take. It's good to be prepared..

I know this isn't what the question was but, to me getting DX'ed is as important as who is the first person to tell you. The doctor who will treat you along the way..

 

Aggie

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