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View Full Version : I can't take it.... am I nuts?



Jenfrombill
10-08-2008, 08:29 AM
I have posted before and here I go again. I tested positive for Lupus Anticoag twice and then negative a third time. I am ANA positive 1:640. I have had tendonitis of rotator cuff, AC joint inflamation, elbown inflmation or tendonitis? I have the classic malar face. Rashes and everything! I am now vitamind D def. but the rhuemy completely dismissed me because she said my Lupus Anticoag is now negative. I am positive CRP as well. She told me I could have no other Rhuemteological disease because I was Lupus Anticoag positive but then said because the 3rd one came back negative, there is nothing. BUT- she also said she would not want to clinically diagnose me LUPUS SLE because I would have a hard time with life insurance policies and possible insurance. Is this normal? Now I need to see a doctor for pain in my sternum/back when swallowing. My primary thinks maybe muscular or just some inflamation but how much inflamation can a person have for no reason? Keep in mind at one point my CRP was over 50! Maybe I am nuts? MRI's show inflammation, tendonitis and stuff- that I can't make up! I also have degenerative disc disease of the neck, oh wait.. no- one doctor says I do another says I don't... Let me see what happens with that. So you must have positive Lupus Anticoag to have Lupus? Can it go from positive to negative, oh no, it can't the rheumy said no. So there are no other autoimmune diseases out there? I told her my hair was falling out, mind you it was up on the top of my head in a clip so you can't see my scalp. Her words " I do not see any scalp damage from hair falling out." Well, I don't have scalp damage or lesions, or cuts or whatever she was looking for, but she could have looked!

Jenfrombill
10-08-2008, 08:34 AM
sorry totally venting and confused. I can only be told I have inflammation of this joint, that and this before I start wonder does any doctor think this is abnormal? Maybe I am just chronically inflammed, or just crazy. :-)

coltsfan
10-08-2008, 10:06 AM
Jenfrombill,

I am still very new to all of this, so I don't have any answers for you. I just wanted to let you know that you will be in my thoughts and prayers that you find a doctor that will help you feel better. From what I have read, you aren't crazy, just have really bad doctors.

Love and prayers to you.

cheryl_v
10-08-2008, 05:53 PM
Hi, just wanted to say your not nuts. Docs can make you feel like it, so don't believe it. Some docs are good, hopefully you'll get one soon. Wishy-washy docs can drive anyone to think they're crazy. Hang in their. Frustrarting as it can be, it does get better. Your strong and ok, don't let them make you think other-wise.

Jesse
10-09-2008, 01:56 PM
Your story sounds so familiar to others I've read over the last 18 months at another forum. Sometimes the disease process isn't "by the book" and some doctors have a really hard time acknowledging those that are in the gray areas. No, you are not nuts. Keep plugging away, talk to other doctors, keep at it until you get the help you need. It is out there but sometimes it takes a while to find it.

DrinkofWtr
10-29-2008, 08:41 AM
You would have a hard time getting health insurance if you get a formal diagnosis of Lupus SLE. My Doctor, at the time, he is now retired, told me that the isurance industry treats it for insurance purposes like cancer.

Sorry you are suffering so. I, too, have some of the same things as you do rotator cuff injury, degenerative disc disease--that one really bothers me. I opted out for surgery for that, now I am wondering if surgery would have helped the pain and discomfort, and malar rash. You are not crazy, but I can understand you feeling like you are for the pain can really be unbearable at times.

There is always something to keep you hopping!

KathyW1958
10-29-2008, 09:31 AM
Hi Jen,
My name is Kathy and I have SLE Lupus and have had it from what the doctors tell me for over 44 years. I will be 50 in December. I did not get diagnosed until I was 36, because none of the doctors would listen to me until the situation got serious. It sounds to me like you definitely do have Lupus and possibly Sjogrens with it or some other Auto-immune disorder due to the rotator cuff problems and the Malar rash, not to mention the ANA being so high. I think that you definitely need to find a different Rheumatologist as soon as possible. None of it is in your mind and you are not crazy. I hope that you see a different Rheumatologist.

Hugs,
Kathy

laurid8967
11-05-2008, 03:03 PM
Hey JenfromBill...Its me Lauri, 'member me? If I remember correctly, you are from the Boston area, right?
OK, Im not sure what test your rhemie is even referring to when she says lupus "anticoagulant"...If your ANA is positive, combined with your other symptoms, plus elevated sed rate and CRP - I would think that is enough for a Dx!! There is no ONE test for lupus, so her saying that this test now being negative proves you dont have lupus or anyother disease sounds like muck to me.
Can you get a referral to a new rheumie? I understand about not wanting to Dx with something due to insurance issues, HOWEVER, I would rather be treated for my illness and try to live as normal as possible, than go through life in pain and exhaustion JUST to get life insurance.
I think I have given you the name of my rheumie in Quincy, but if you want it again, PM me, OK?
I hope you feel better soon,
Lauri

laurid8967
11-05-2008, 03:05 PM
And, to answer your question - NO, constant inflammation is NOT normal and is an indicator from your body that something is WRONG!!!
Love Lauri