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I had some blood test taken last week to see if I had arthritis and yesterday the doctor told me I was borderline lupus. I am totally lost on this lupus subject. I know that I don't get rashes yet except for this spot that has been getting bigger on my cheekbone, I thought it was an age spot but I am just 41 years old and I have had it for at least 5 years does anyone think that is becasue of the borderline lupus. When I found out I am borderline lupus I called my mother and she told me that my aunt has had lupus for 50 years. I also have headaches quite often and I also have migranes. My joints in my hands have started feeling tight and swollen and my kness have been hurting for at least 2 months. I have made myself an appointment with a specialist about the lupus. My regular MD acted like it was no big deal to be borderline lupus. Am I stupid to be concerned enough to make myself an appointment with a specialist to deal with the lupus. I also have high blood presssure and sometimes it gets up to 130/150. If someone would give me your opinion on this subject please feel free to let me know what you think and how you feel.
Thank You,
Soni Gordon
Claremore, Oklahoma
Soni,



Just wanted to respond (even tho I don't feel like the board expert) so you didn't feel you're being ignored. Sometimes it can take a few days to get a response because people are experiencing a flare, or are just too tired to think or type, so please be patient with us. I've never experienced head aches as a regular symptom, but that doesn't mean it isn't one...see what the others say.



I do think it's a good idea to go to a specialist!!!! I am curious as to how your dr. came to the dx of borderline Lupus. What tests did he run? Ask for copies, keep one for yourself, and take a copy of them to the specialist. Take care and keep us updated, Ann

[This message has been edited by Ann S (edited 03-17-2001).]
I'm with Ann! Hopefully Jeri will post to you soon as she seems to have so much knowledge and information about lupus. If you got the dx that has lupus in it at all whether it is borderline or not I would definfinitely see a specialist. Its not worth risking your health. I have another friend who I just found out yesterday is in the early stages of lupus (funny things you find out once you start talking to people-she heard from a mutual friend I was being tested and then told me this about herself) and she told me her mother also had lupus. Unfortunately in her case it took her having several strokes and kidney problems before she was finally diagnosed. From the little I understand about this disease the quicker you can stop/slow the progression the better. I am still trying to find out if this is what I have. So far the only thing I have to go on is a positive ANA screen and lots of symptoms including joint pain and memory problems. ANYWAY I had to force the issue a bit but I am seeing a specialist next month so maybe I will get some answers! Good Luck to you and keep us posted. (ANN I think you are a wealth of information too but you already responded!)

Jeannie M
Hi Soni... Ladies,

I think that by borderline Lupus the doc may believe you don't have all the criteria to be truly diagnosed as having Lupus. However, I believe a Rheumatologist or Neurologist could more be the judge of that.

Could it be that you are taking other medications that are interfering with the water pill. When I took Elavil... it caused Urinary retention... then the doctors give you Lasix and you still can't go. Just a thought on that one. I hope you find the cause to it. I would like to hear how you are doing as this progresses.

You know that it's not the most important thing to have a true dx of Lupus, just as long as the doctors treat your symptoms. And of course when they treat your symptoms, they do have it in mind that you are a probable candidate for Lupus. For years it was that way for me... I never got the Malar rash on my face or sever joint pain... it was varied other severe symptoms. I have come to accept a long time ago, that Lupus effects each one of us very differently. We will probably never have the exact same symptoms all at the same time.

I do like to be aware of other's symptoms and problems,though, just in case I get them too. That way I won't panic too badly and wonder why I'm getting this new symptom.

You are in my thoughts and hope you find out what's happening...

:D... Kathryn
HI Soni!
The computer was fine- I was not, but I am feeling a WHOLE lot better now.
Lupus is like being pregnant: there is no "borderline" you either have lupus or you don't. :-)
I am glad that you have an rheumatology appointment. The reash stuff, I had NO experience with until this week. I am developing a malar rash- over cheecks and above eyebrows. It just looks like a "touch of the sun" now. I got a little freaked at first, cause I am supposed to be experiencing a period of lupus-under-control. haha no rest for the weary haha These diseases keep us from getting bored. I was selfish as I got to feeling better and researched the rash instead of getting back on board to share with you. I am sorry, but I had to know what I was dealing with. The discoid rash you mention, Soni, is differrent than what I have and may or may not be a different form of lupus. The joint pain and stuff may be RA (another autoimmune disease) or lupus- the rheumie will differentiate. The discoid lupus is diagnosed and handled in the same process.
The best advice I can share is to look back on all our past posts on this board and investigate/reseach/ask questions. I kept a notebook for a while of all my print-outs. I had so many bookmark shortcuts on my computer desktop that I had trouble finding my browser. haha
share what you are experiencing with a family member and start training that person as you patient-advocate. You need someone to help you thru this- someone who KNOWS that you aren't crazy when you feel like you are, or when a professional treats you like you are.
Autoimmune diseases are a definate-rollercoaster, but I'd much rather that I had these "things" than for anyone else to have to go thru it. I have learned more about myself and family since being diagnosed. My Savior certainly has grown me thru this, too. Thanking Him for His lovingkindness!
Keep asking and keep us posted,Soni, cause we are all in this together and really DO care.
Jeri
PS I hear that the further we are away from the early 30' when we are diagnosed, the milder the disease. I don't know how accurate that is, but I am 54 and have had this for about 7 yrs (diagnosed late last year) and my case is MUCH milder than anyone I know of ( no joint nor organ damage).





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