should I push for diagnosis?

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jesimae
Regular Member


Date Joined Oct 2009
Total Posts : 109
   Posted 4/20/2010 11:54 PM (GMT -7)   
Update: I have not yet been diagnosed with lupus, but my physician has been giving me prednisone to treat flares. I have many of the symptoms: some are rash, joint pain, hair loss, proteinuria, casts, extreme fatigue, absent-mindedness, scalp lesions, mouth sores. I had my last flare in November. Prednisone worked like a charm. Doctor drew labs before I started the prednisone and I was ANA negative. I'm apparently flaring again. Rash has returned. My right big toe and knee and my left hand and wrist hurt. I'm exhausted. Hard to stay on task.
 
I have heard that having a diagnosis of Lupus affects your insurance and ability to afford treatment. Should I see a rheumy? Also heard that it takes years to get a diagnosis, but shouldn't I be concerned about what systems could be affected? Worries me about the proteinuria and casts...
 
Thanks!
Jessica, diagnosis: unsure


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/21/2010 11:46 AM (GMT -7)   

Hi Jessie, Sorry I didn't respond sooner. I am hurting quiet a bit today but I took a pain pill so I could set down here.

There are a couple of things I would suggest. First You can push all you want but that won't get you an answer. Yes it is true that it can take years to get a diagnosis. Even with the symptoms you have.

Also I suggest you ABSOLUTELY see a rheumy. When you call around find out if they are schooled in autoimmune diseases such as Lupus. Not all rheumies are the same. Of course you should be worried about what might be going on inside of your body. Even without a DX they can still and usually do treat your symptoms to try to stop further pain and inflamation. Also if you do not get the help you need from the first rheumy don't give up. Most of us don't have good luck with the first second or even third one we get.

The last question about the insurance is something I have heard about but can't help you with. I have been diagnosised 100% disabled for a long time. I was very lucky(if you can consider it lucky) that I was so sick they asked me questions on the phone sent me to one doctor and called and told me I was approved. That is almost unheard of. The bad thing is my life expectancy isn't so hot. But hey I believe in God so either way I win!

anyway that's the best I can say I hope you get some answers soon

blessings carol

 

 


furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,effexor,citracal,pottasium, vitB,iron,xopenex,advair,spirivia
 
Each moment of life is a gift of God. psalms 39:4
 


jesimae
Regular Member


Date Joined Oct 2009
Total Posts : 109
   Posted 4/21/2010 1:06 PM (GMT -7)   
Thank you, Carol. I made an appointment with a rheumy today. The prob is I have to drive 4 and a half hours! He's the closest one who accepts my insurance! I go next Tues the 27th. I have been on the phone with the insurance company all day, and it has totally worn me out! I pray that I have the strength and energy to make it there on Tues! I do feel a little better just knowing I'm gonna talk to someone who can help me. Oh and I checked him out. He has a high volume of SLE patients. Fingers crossed, head bowed. Whew! I'm gonna go lie down...

Thanks again!
Jessica, diagnosis: unsure


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/21/2010 1:36 PM (GMT -7)   
Oh Jessica that's terrible. Do you have some one that can drive you there? I'm worried as badly as you feel that the trip is going to be to hard on you. The last thing you need to get more warn out. I sure hope this doctor is worth it.
Let us know
I'll be praying for ya Tuesday!
carol
furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,effexor,citracal,pottasium, vitB,iron,xopenex,advair,spirivia
 
Each moment of life is a gift of God. psalms 39:4
 


jesimae
Regular Member


Date Joined Oct 2009
Total Posts : 109
   Posted 4/21/2010 3:11 PM (GMT -7)   
Thanks again. I'm trying to see if my husband can take that day off and go with me. Think it would be good for both of us. He has had a hard time understanding this. I showed him the spoon theory and he rolled his eyes and said, "You don't even know if you have it." Hurt my feelings. I told him that reguardless of the diagnosis that is the way I feel. Sometimes I wanna choke him lol. My mom is a big support though. She has fibromyalgia and doctors treated her like she was crazy for years, so she totally understands. Thank God for her.
Jessica, diagnosis: unsure


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 4/22/2010 6:37 AM (GMT -7)   
Wow 4 1/2 hours. That is insane. Well, I am glad you are going to see a Rhuemy even with the long drive. about pushing for a diagnosis. I wouldnt necessiarly push for one as long as your symptoms are being treated but I know several people who have to have a diagnosis so they don't feel like its in their head, which I understand.

When I was first diagnosed, I knew something was wrong so I went straight to a Rhuemotolgist. My first apt lasted about an hour long. Had to answer a lot of questions and they took a lot of blood work. By my 2nd apt, I had my diagnosis. How quickly you are diagnosed will also be what your blood work shows. I was text book lupus as far as my blood work showed and still shows to this day!

Well, let us know how your appointment goes on Tuesday!

jesimae
Regular Member


Date Joined Oct 2009
Total Posts : 109
   Posted 4/22/2010 4:57 PM (GMT -7)   
Thanks, Amy. I think it's just in my nature. I have to know;) I'm never textbook anything...
Jessica, diagnosis: unsure

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