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Hey! I could really use some help in finding out whats going on with me! To begin with, in August I tried to be a kidney donor for this woman with SLE. I had finished most of the tests, and everything was looking good until they noticed protein in my urine. I am not sure on what measurement they use, but they said it was 100 of protein. They were not too worried about it, but decided to do a ana test just to make sure. My results were positive ana, 1:320 ratio and speckled pattern. Unfortunately, since they did not think it was going to be positive that was the only test I was given. Since my ana was postive and the protein problem, I could no longer be considered a donor. They were amazing doctors, and still talk to me about how I am doing. But, I did not have health insurance and was not experiencing any major symptoms besides fatigue and weakness. I attributed this to allergies, or maybe a passing illness. I am planning to start teaching in August, and thought I would wait until then to get checked out.(good insurance!) But, unfortunately, over the past six months my symptoms have multiplied and gotten worse. I decided it was time after months of extreme fatigue, weakness, heart racing,pressure on chest, light sensitivity, flustered and get red in face and lower arms,body temperature rising, muscle tension, irritability, achy joints(wrists and knees), excema and losing about 15 pounds from not being able to eat. I am not sure if this is because of stress and not feeling well or a gi problem. I went to a local emergency room, who did not seem interested and were slightly rude. I was given a sed rate and complement level test. (Sed rate 3, C4 complement low) They referred me to a rheumatologist. I was so excited about the appt. Thinking finally someone who can help me. I came very prepared, with a written long list of symptoms. The doctor only read it for a second, and handed it back to me without even finishing it! How can you be sure I am ok, if you do not even know all of my symptoms! She then asked if I had clumps of hair falling out, which I don't. Or if I had lesions on my body, again no. She then proceeded to tell me that some people just have a positive ana with nothing wrong and I seemed to be one of those people. She then walked out, after I had been waiting for hours, after staying no more than 20 minutes. She referred me to a gi doctor for the stomach problems, but what if its just stress causing these issues! I am very respectful and know they are trained, but can that be accurate with a high ratio, speckled pattern, low c4 complement levels and many symptoms! I do not feel well, nor do I feel like I used to. I really feel think something else is going on, but some of the doctors seem disinterested. I did go to a local hospital for people without insurance..could this be why I don't feel satisfied for the care. I want to get a second opinion, but they are trained in this area, and they should know. Also, I feel more and more crazy everyday from all of the stress and people thinking its in my head!
Sorry I wrote a book, meant to just recap results, but I am really in need of some help. Any suggestions would be greatly appreciated!! Thanks and hope you all are doing well! :)
 

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More thorough check

AmyMarie, please get a second Rheumatology appointment if you still have not got the proper care and attention due to you. You know your body better than anyone else. Try and find a recommendation for a Dr that has a history of good care for auto immune problems in your area.
I don't understand how a rheumy can dismiss you with two questions when the diagnosis is so complex. You may not have Lupus but you need to have a thorough check-up before either including or excluding that diagnosis.
I have not lost hair or had skin lesions, but was diagnosed in Nov following a flare that hospitalised me and a few months of my autoimmune antibodies going a little haywire, but not dramatically.

I wish you the all the best, be firm about a second opinion.. you need your mind put at rest either way. :worried:

XClaire
 

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Hello and welcome :)

Your instincts are right and these things do need checking out. I quite agree that you must seek another rheumatology appointment. However, be very sure to look into it beforehand and find a recommended doctor. You can ask for recommendations via the "find a lupus doctor" section on this forum.

The thing is that auto-immune diseases are incredibly complex and most doctors, including many rheumatologists, know little or nothing about them. You need to find someone who specialises specifically in auto-immune diseases.

Just FYI, I don't have my hair falling out in clumps, nor do I have skin lesions, but I DO have SLE...what a silly statement to make :mad:

It is true that some people have positive ANA with nothing wrong but it is also true that a diagnosis can only be given after thorough blood tests (ANA is only really a screening test as I'm sure you know) AND clinical examination + history. Your ANA, although quite low, is still high enough to warrant furhter investigation.

Is the person you wanted to donate a kidney to a family member? Family history is also very important when you go for your appointment.

bye for now,
Katharine
 

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Thanks for the help!!

Thanks for all your advice and support. I definitely will take your advice for a second opinion. I know they are skilled in the field, but I need someone who is going to sit down with me and closely evaluate my results and symptoms. Not someone who when they walk in doesn't seem to care, or too busy to stay more than twenty minutes after saying I must be fine because I don't have major symptoms going on. Does this seem to resemble lupus, or maybe another autoimmune?

I found this site a week ago or so, and even just reading all of you comments to others have really supported me. I am glad I found it, I feel a lot better already having people there to support me!

Thanks again for all you suggestions and advice. I am very appreciative, and it means a lot. This is all new to me, as I am continuing to learn more. Your insight and experiences mean more than you know!! Hope I can be just as supportive to others!
 

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You definitely suffered through a horrible first rheumy appointment! Did the rheumy have access to your past test results that were positive? An ANA titre of 1:320 is sufficiently high enough to warrant additional follow up testing AND a much more thorough physical exam and medical history questioning that what you got. Only about 1% of people with a titre at that level end up being found to be a "false" positive (healthy people with a positive ANA for no known reason).

Your protein of 100 is probably referring to a 24 hour urine testing - and indeed while it's not normal to leak any protein, they don't even start to think about additional testing until it rises to over 150, and don't really worry until it gets to be over 1000.

I would recommend searching the site for any doctor recommendations near you, or posting in the find a doctor forum to ask for any suggestions. You definitely need to find a better rheumy, and need a much more thorough evaluation. You may need to wait at least a few months to get into a good one, and it would be good to have that health insurance if possible because all the testing can add up!
 

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yep, I concur with all fo the above. took me 10yrs to get somewhere and i suffered so badly i couldn't walk or make memories. Listen to your body, keep asking for answers until you are satisfied that they are correct. it's your life, your body and you darn well deserve the best care that one can get in 2009...chin up girl you aren't alone :)
 

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My first lupus specialist appt, was aweful.
He told me that i did not have SLE, and also discoid Lupus.
How can he say that, when a biopsy tells no lies.
I have now had 3 more SLE tests all negative, but over the last 5 yrs my symptoms are getting worse. (see discoid lupus & sle symptoms post).
I go to see a rhemie in april, i hope she can find something.
fed up with it all, not knowing.
 
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