newbie with possible lupus..

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imabitdizzy
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/18/2009 6:45 PM (GMT -7)   
Well, I am brand new here, just trying to get some opinions and advice about lupus. I suppose I should start from the beginning. I had started the whole process of getting lap band and I had mentioned that I was partially diagnosed with a connective-tissue disease. You see, I have three reconstructions on my knee due to dislocation. I have extremely relaxed joints with stiffness and pain, so a random doc I had seen mentioned that I probably had a connective-tissue disease. (he never followed thru with tests) Well, the surgeon told me I needed to follow through with a rheumatologist. I had to see my primary doc for a referral and he doubted that diagnosis so he ordered some tests. I got the results, and it didnt say much except that my C3 was abnormal and to follow up with my PCM (primary care physician) I called the office and they told me that it could mean one of many things and not to worry, but that she would have the doctor review it and call back with his notes. Days went by and the nurse called me back. Apparently the letter didnt explain it all and she said my sedimentation and my ANA were high as well as my C3 being abnormal. She mentioned rheumatoid arthritis and Lupus. I wasnt familiar with Lupus (I guess Im still not) so she mentioned kidney problems, joint swelling and pain, eye dryness, hair loss, etc. This had me pretty alarmed. She then told me that the doc wanted a follow-up immediately. So I scheduled the appt for 4 days later.

The things that have me extremely worried are that I have been having reoccurent kidney infections for YEARS. Im talking 10-12 infections a year. No one has done any tests to find out why, they have just been treated. They stopped for 2 years, and now they are starting once again. The joint pain is the other. My feet and hands swell often and my knees are always stiff. My hands and soles of my feet get red, and swell and ITCH for DAYS. In addition, for the last 6 months, I have spiked fevers and had like 12 hour flus. One more thing is that I have had some very strange infections. Thinking back on it, I always had an infection of some kind or another. Ear, eye, sinus, chest, kidney, bladder, vaginal, cervical, lymph node... Its scary.

I dont know if I am trying to connect my medical problems with this, or if I really might have it. One moment my head tells me to accept it, and the next Im totally in denial and think this is all a mistake. Im not sure what Im wanting anyone to say or do. Maybe I just need someone to help me wrap my head around this. Im only 25. I dont want to die early, I dont want to be in pain, and I sure dont want to miss out on any parts of my sons life because Im sick. Im so independent and I think Im superwoman all the time. What would I do if my husband had to take care of me?

If anyone can help in anyway, or if anyone thinks these test results are vague, please tell me. I dont know anyone with this disease, and no one in my family had it that I know of. I just need someone to talk to about this... Feel free to im me on yahoo if you'd like. kayla_loves_allen

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 8/18/2009 9:35 PM (GMT -7)   
So I think you have an appointment with a rheumatologist in a few days? That is the next step, a rheumy who is familiar with lupus and RA. One way to make sure you have one is to visit www.lupus.org, find the local chapter, and see what rhuemy's participate - those are the ones who have interest in and knowledge of lupus.

I only recently read that kidney problems can be indicated by itchy feet! So maybe we can fix those feet right on up!

Anyway, first thing to do is stay in the present - try not to think ahead. Lupus and other auto-immune diseases present differently in everyone. Often people have only mild symptoms most of the time, and have "flares" when stress skyrockets -- stress is something to avoid as much as possible.

So try not to worry about symptoms you know you have -- this is a chance to get them fixed! And try not to worry about symptoms you read about but don't have -- there is NOTHING that says that lupus patients do or will get all the stuff they talk about. These days we live just as long as other people...don't let that worry you.

Things to do -- 1) stay out of the sun! I know that sounds strange, but that is one of the easiest things to avoid and one of the things that most often aggravates the body - if you've been out with the kids all summer that could be the source of the fevers. 2) Make a list of all the illnesses or oddnesses with your body that you can remember (see the topic at the top, it gives lots of hints about what to do before the first dr visit) 3) see that rheumy

Take a deep breath and hang in there!
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/19/2009 8:04 AM (GMT -7)   
Imabitdizzy,

I agree with Lynnwood about taking a list of all of your symptoms (past and present) to your rheumy's appointment. Typing it up will help prepare you for your appointment and it will help your doctor get a better handle on what you're talking about. Also type up a list of questions you have for him.

I hope you get some answers. Please let us know how the appointment goes.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 8/19/2009 9:21 AM (GMT -7)   
Seeing a rheumy is the first step.  The next one would be to see a nephrologist about your kidneys. 
 
Lupus is a scary disease but it can be treated and it is probable you will live a long and normal life.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


imabitdizzy
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/21/2009 5:19 PM (GMT -7)   
Thanks everyone, I appreciate the support! I went back to the doc and got a referral for the rheumy. I should get a call with my appointment on Monday. Until then, I have to wait. MY doc also discussed my test results. My ANA was 1:160 speckled, My Sed Rate was barely elevated at 21, and my C3 was very high at 209. Not sure what those things mean, but thats what she told me.

cookie monster1
Regular Member


Date Joined Aug 2009
Total Posts : 41
   Posted 8/21/2009 8:50 PM (GMT -7)   
Hi imabitdizzy,
I agree with what all the others have said....one more suggestion would be to get copies of all your labs and any test they run for your personal file....I have found that most of the time if I ask for a copy while I am in their office they do not have a problem getting it for me....other times they charge but I have found it to be helpful in trying to figure out what is going on with my hubby.
Take care and let me know how your apt goes
cookiemoster1
 

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/22/2009 6:14 AM (GMT -7)   
Imabitdizzy,

A low C3 is indicative that one's lupus is active. I'm not sure what a very high C3 means.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 8/22/2009 3:45 PM (GMT -7)   
welcome to the forum. You received such great advice, there's nothing I can add to it. Wishing you well! Keep us posted! Judy

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 8/22/2009 4:05 PM (GMT -7)   
High readings usually mean your disease is active.
 
 
 
Hope this helps you to understand.  In most cases diagnosis is a combination of lab tests and clinical symptoms.  There is no single test for lupus and diagnosis in some cases is very difficult and can take a long time.  That is why it is important to have a doctor experienced with AI diseases who can put the pieces of the puzzle together. 
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/22/2009 4:22 PM (GMT -7)   
Bill, It has always been my understanding, from my rheumy, and from the nih site you linked to that:

"Decreased complement activity may be seen in:
Bacterial infections (especially Neisseria)
Cirrhosis
Glomerulonephritis
Hepatitis
Hereditary angioedema
Kidney transplant rejection
Lupus nephritis
Malnutrition
Systemic lupus erythematosus"

Am I missing something?
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 8/22/2009 9:19 PM (GMT -7)   
Patty,
 
Sorry, I got it reversed.  However, complement tests are not conclusive and are used to confirm diagnosis as I understand diagnosis.
 
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.

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