View Full Version : Mystery Diagnosis?

07-06-2009, 12:51 PM
I am fairly new to this site so all the information i can get will help me a great deal. I have suffered from severe joint pain probably since the age of 16. It wasn't until the last 2 years did we think that anything could be really wrong with me. About a year ago, I was diagnosed with having severe hypertension and am currently taking a whole slew of pills for it. My ANA was tested this past winter, and it came up negative. My mom and I however, are convinced that this is what I have. My doctor is sending me back for more blood work and should have the results soon enough.

It wasn't until these past few months did I begin to connect all of my symptoms together. For over a year now, I have had issues with my skin - large circular patches of rashes over my body. I have also been experiencing cognitive issues in the last 6 months; mood disorder, and memory problems. My fingers swell up pretty bad at night and in the morning, sometimes to the point where I cant move them. I have also noticed, with summer and the warm weather that when I go out into the sunlight, a few hours later I have a rash over the bridge of my nose and cheeks. However, this only happens when I'm out in the sun. I have also noticed little sores under my tongue and on the side of my mouth (ucler-like sores)... I also have really bad tingling in my feet and hands, my leg and arm tend to go numb as well. Another strange thing, I get sick about every 2-3 weeks from common colds, and they take almost a month to get rid of with inhalers and sometimes steroidal medication. A common cold that usually lasts a couple of days in family's and friends last a month for me and turns into a viral bronchitis.

I was told once by someone that suffers from lupus that it is better to go out into the sun for a couple of hours before getting the ANA checked, as the sensitivity causes a flare in the antibodies - is this true? It would make sense, since I got my blood work last in December when you tend to be inside a lot.

Any help or information would be greatly appreciated.

07-07-2009, 04:09 AM
You are right, it does sound like lupus. You can test neg. a few times and then all of a sudden pos. Some people had to wait years for a diagnosis. I hope that you get yours soon, so that you can get the meds you need.
Oh yeah, welcome to WHL, this is a great forum, people here are very helpful and caring.


07-07-2009, 09:36 AM
Hello Steph,

Welcome to our group! If you check your private messages, you'll
find a response/message to your questions. Hope all is well with you!


07-07-2009, 02:59 PM
It sounds a lot oike Lupus and everyone is right.....it could take years before you are diagnosed. This leads to physical and emotional pain. You must find patience in yourself because if it is Lupus you have a bit of a battle in front of you with lows and even some highs. Surround yourself with a great support system and they we will be cheering you along while you travel this road. It is a very sad disease but as you see here, from the ashes of Lupus we are born again. There is still humor and humility to be found amongst all of the members. There is so much love that one website can not contain it and it spills over into our everyday lives. There ares till smiles to be worn on our faces and hope to see in our eyes. You have come tp a place where you will be supported 200% and night or day, someone will be here for you. Keep us posted as you begin this new adventure and always remember.......you are not alone!


07-10-2009, 04:03 AM
Danica's right...we're here for you regardless. It took me 16 years to get my positive diagnosis, but I'm glad I did...if for no other reason than to find the wonderful people on this board!!

07-10-2009, 08:57 AM
Thank you so much everyone! If only family and friends could be this supportive.. When you don't have a definite diagnosis, it's hard for them to understand.. this group is amazing.

I've had a really rough last two days, and you guys have made my day so, thank you!!!

07-12-2009, 12:06 AM
Anytime!!! That is what we are here for. Keep you head up and remember that there are people out there who know what you are going through and are willing to talk anytime you want :angelic:

07-12-2009, 01:04 PM
hi stephlovespeter,

so sorry you have had a couple of bad days....hope you get relief soon. Whereas you said you only get the rash from the sun, you should watch out for other symptoms as well. I get fatigue, joint pain and the rash when i get in the sun.

hope you feel better soon, i am so glad you joined our group....we do understand.