View Full Version : frustrated
02-04-2011, 06:25 AM
why does it take a Dr so long to diagnose you?? now my Ana came our positive. and he still doesn't think i have lupus.. but he put me on prednisone for a month to see how i would do on it... and he said if i feel better on this then its more towards lupus and not fibro.. for one month the prednisone took my hip pain away and most of aches went away.. and he took me off it. and they all came back.. and he still doesn't think its lupus. he did say i do have fibro. but from what i have read the prednisone wont help with fibro .. I'm so confused,, i have all the aches in my mussels, joints, headaches, and numbness in my feet and fingers arthritis and tendinitis in my hip. and now pericarditis .. i never had a rash on my face but i did have one on my back twice and once on my chest. and other people saw it.. i just want to get on the right meds and try to feel better but all i do is go back and forth to Dr's.. it seems to me from what i read and how i feel i may have lupus. why dont the dr see this
02-04-2011, 07:47 AM
You just asked the golden $billion dollar question and boy do I wish I had that answer for you and all of us others who are still diagnostically playing limbo. This question has been raised multiple times on multiple threads and the best summary of an answer I can give you is this:
Many AI diseases share common symptoms and traits that overlap each other. Additionally, several diseases, such as Lupus, are know to mimic other diseases in their appearance both physicially and from a laboratory perspective. Diagnosing Lupus can be, for a lot of people, a long frustrating journey filled with ups and downs and times where your doctors say you do have it but then turn around and say you don't. Sometimes your blood work meets the criteria for diagnosis and then the next time it might not. In your case, having fibro isn't making a Lupus diagnosis easier as your doctor is still weeding and sorting out the Fibro symptoms and reactions from this other AI disease(s) and it's (their) symptoms and reactions. From what you are saying, you have a very proactive doctor. He didn't completely rule out Lupus b/c you acknowledged that he put you on the pred to see if you have the typical Lupus reaction toward it. He sounds like my rheumy who is focusing on another (currently) primary AI disease and recognizing that there is something else that seems to be going on and has even acknowledged Lupus as a possible fit. I know it's hard - but stick with him on this and see where he goes. As slow as it may seem - he is moving forward and doing so cautiously which, in my opinion, is a good thing so he can properly treat you. (((hugs)))
PS- What part of NY are you in? I think I asked you on another thread but brain fog prevents me from remembering if that is true or not.
02-04-2011, 07:58 AM
thank you .. and im from Kingston
02-04-2011, 08:12 AM
I know that is frustrating to wait for a diagnosis and to find medication that works for you. We have many people on here who are still awaiting the "official" diagnosis. As Sandy said, it sounds like your doctor hasn't ruled it out completely & Lupus is known as the great mimicker, so even sometimes when you may have symptoms that to us scream Lupus - it still takes time. I know my doctor took her time in making sure because once that diagnosis goes on your paperwork, it's hard to come back off if they are wrong. My question is, did he put you back on the prednisone after the symptoms came back?
BTW - My grandmother lives in Kingston! How are you dealing w/all the snow? She says it's one of the worst winters, although she says that every winter now. LOL ((hugs))
02-04-2011, 08:13 AM
02-04-2011, 02:31 PM
no he did not put me back on pednisone. i go back to him next week.. i wonder if i know your grandmother. i have lived here since 1974.. i hate all the snow. the snow banks on the streets are awful. hard to get around.. its not the worse winter but it is the worse in years.. I'm hoping to move in the summer down by liberty.. the crime rate is up big time and its getting trashy here. so i want to move,,
02-04-2011, 02:35 PM
i went to my obyn today and she says i have lupus... she said her sister has it and i have the same symptoms as her.. and she said if the pednisome worked for me for that month i have it.. cause the pednisome wont work for fibro.. she doesn't understand why its taking them so long..
02-04-2011, 06:31 PM
My reaction to prednisone was off the charts in a positive way then when my ANA went down she wanted to take me off the pred. I'm not a begger, but I begged her not to do that since it cut so much of my pain, not to mention that my lungs always clog up the minute I reduce the pred. I have sever fibro and take a lot of pain meds for it but the pred. works the best. I absolutely understand what you're going through and the frustration and the lack of understanding. My mom asked me today what doctor I'll be seeing next week. She's right, I see one every week anymore but next week I have off and I plan to keep it that way. I still need to find a blood doctor and cardiologist and had to move my lung doctor appt. out a week until my medicaid card arrives. It's exhausting, isn't it?
02-04-2011, 07:15 PM
I am in a similar situation and yes its frustrating.Its like they dont want to be the one to diagnose you,they rule out so many other illness first.Then say it is then change their minds,then again say they think it is but still no dx.Hang in there,just keep fighting them,know many members here understand what its like.You are not alone.Hope they help you soon.Keep posting.
lots of love
02-05-2011, 02:13 PM
Thanks Amanda - and I guarantee, I will keep fighting! We may not have a lot going for us, but we are definitely a group of fighters!