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View Full Version : UPDATE - Still no Diagnoses



RedHairAngel
07-10-2009, 11:55 AM
Ok so it has been years and months trying to find out what the heck is wrong with me. I went to a Rhuemy at Oregon Health Science Univ. and she said she really doubted that I have Lupus. There was no evidence showing the day I saw her. She did mention Fibromyalgia in great lengths but my "big" joints hurt not my muscles and she mentioned in passing Bechets Syndrome which has a lot of the same symptoms as Crohn's and Lupus (which my ANA was possitive for Lupus and my DNA strongly suggested Crohn's).

There were two doctors in the room and they kept saying over and over again go see a dermatologist, get this biopsied, have this skin test done, and the next time I think I have a yeast infection get the sores biopsied and my mouth sores biopsied. uuuuughhhhhhh I was soo disappointed when I left her office becasue she said she wouldn't diagnose me
that all my blood work that came back abnormal were just Markers and no one could really make a diagnoses off them and that normal people who are healthy show these markers.

I wanted to scream/cry and run and hide. How can my Sed rate, CRP rate be high, my white blood cell count be slightly elevated, have an ANA 1:80 tier homogenous possitve for Lupus result, and a possitive results for Crohn's and yet I am normal?! Nothing is wrong?

My joints hurt, I have sores all over my abdomin. and if I am lucky I will have a day without a headache.

I see a dermatologist on WED, I am going to have the skin prick test done and I am praying for a possitive result now how sick is that!

Debbi

Angel Oliver
07-10-2009, 12:09 PM
Oh Debbi im sending you a big hug.I so understand your sadness and frustration and hopes from the skin prick test.I too am in a similiar situation. Living with the unknown is like living in limbo.I know for me a diagnosis of whatever is wrong with me will get a triple back flip no matter what the pain is.To go on for years without a diagnosis is truly awful so please know, you are not alone.
I read on this site often,many people wait years for the diagnosis.Recently i was diagnosed with fibro too. I so far have M.E Chronic fatigue syndrome,yet at christmas before bloods were in was told it was Lupus.So i have many doubts now.
Hopefully you will soon get your answer.We have to believe the doctors know what they are doing,or if you have no faith in them find another one. I hope you take pain meds for the headaches too.
Im thinking of you.

love Amanda.xxxxxxx

ButterflyRN
07-10-2009, 01:16 PM
Debbi stay strong. I know it's frustrating. As already stated sometimes it does take years before someone is diagnosed. I wish you the best of luck and let us know how the visit with the dermatologist goes!

SandyR
07-10-2009, 06:35 PM
debbie,
I am sorry to hear that you are getting no where fast with your doctors. I am also sending you some big hugs to help squeeze out those frustrations.
Sandy

Saysusie
07-12-2009, 12:26 PM
I wish I could understand why doctors are so loathe to make a diagnosis. It's like doctors are from two schools; one school that will diagnose immediately based upon blood test only and another school that won't diagnose at all, even when symptoms, test results, and history screams "Lupus".
If your doctors are so unwilling to diagnose, are they at least willing to treat your symptoms? We can get by without a definitive diagnosis if we are getting relief from our symptoms due to treatment.
I hope that you do get some answers and that you do get treatment!

Peace and Blessings
Namaste
Saysusie

Danica01
07-12-2009, 11:24 PM
You are not sick because you want some answers and a diagnosis......you are absolutely normal. If doctors had to walk in our shoes for just one day, we would never have a problem with them. The sad part is that they never will walk in our shoes and we will continue to fight this disease alone most of the time. It does take years and this is so physically and emotionally exhausting for all of us and our families. It took me over six years to finally get diagnosed and it was a long, up hill battle. Keep you head up and keep talking to us and venting about what is going on in your life. We all understand and are here for you. I am sending you gentle hugs and peaceful thoughts tonight :hug:

mountaindreamer
07-13-2009, 05:49 AM
oh redhairangel,

i join others in sending my support to you. I agree with saysusie, seems like the drs. could at least start you on treatment options to see if you get relief. My dr. used one treatment to help in the diagnosis process. She said lupus will respond to Medrol injection where as other diseases will not respond. After the injection, i felt immediate relief, and this helped her diagnos the lupus......i don't understand why there is so much variance between drs and their decisions about treatment.

good luck with the dermatologist this week....biopsies don't sound like much fun.