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busymom3
05-22-2008, 06:56 AM
Hi everyone,

I thought that I would introduce myself since I have been lurking for a couple of weeks. I had an interesting doctor appointment a couple of weeks ago and I have experienced a range of emotions since then.

I hope this doesn't get long, but I may type it all out as therapy. :) I will not be offended if you don't read the whole thing. LOL

I went to the doctor about 3 weeks ago because I was having some strange heart sensations. It felt like my heart was doing a somersault in my chest and because of my family's history of heart diseases my husband insisted that I see the doctor. Reluctantly, I went. Only because the doctor's office is not my favorite place to be.

Well, my appointment was strange. I told my doctor why I was there. Heart blah, blah..family history, blah, blah. She patiently listened to me and asked me how my feet were. I told her that they were doing better, thanks. Then, she asked me if I had leg pain. Oh, how to answer that one. I have had leg pain forever. Since I was a girl, but it got really bad in my late teens early 20's. No one knew what was going on, so I gave up talking about it. I told her as much, but I was thinking "Here for my heart"

Then, she asked me if anyone in my family had an autoimmune disease. I am embarrassed to say that I didn't know what that was. She told me a couple of them, and no, don't think anyone has them. The appointment never went back to my heart discussion. She asked me a lot of questions about my skin which I thought was odd. She asked me if I always turned red like I was. I said pretty much. She said, "Your were told it was Rosacea, right?" Well, that is what it is, I was thinking. Anyway, she told me that she was just going to run some blood work. It probably wasn't going to be anything, but she really thought that she should just run it.

Ok, she said it wasn't going to be anything. I came home and read a bunch of stuff about Lupus. Yes, I have some of the sypmtoms, but I really didn't think tha I was that sick. Yes, I am tired, but I homeschool 3 kids and my husband is gone 6 months of the year, of course I am tired. Sure, my knees and joints hurt, but I am almost 36 years old. Aren't they supposed to do that? I do not have Lupus, I told myself.

Fast forward 2 weeks. My blood work came back. A lot of it was fine. There were a couple things off in my CBC and my ANA came back positive with a ratio of 1:640. Thta still meant nothing to me. She explained a little about Lupus and how it can be managed with meds and how I shouldn't be worried and blah, blah, blah...She is sending me to a rheumatologist. I have no idea what I am supposed to talk about.

Through my research, I realize that a positive ANA does not always mean anything. Honestly, I am kind of scared. I now know that my fingers turning bright red and hot after I play piano is not really a good thing. And, maybe, the sores in my nose were not related to the cold weather. Oh, well.

Thank you for listening to me. If you have any suggestions on what to talk to the rheumatologist about that would be great. I still don't know what to say or talk about. I don't go until next month. That is awhile to wait when you have so many questions, but I realize that I am not unique.

Again, thanks for listening. I hope that you all are having a good day. :)

SwirlyGirly
05-22-2008, 07:29 AM
I know you feel like you are in a very weird place right now. I would just go with the flow and be honest with the doctors about your symptoms, even the ones you don't think are a big deal. It could be lupus, it could be something else, it could be not much. Honestly, your symptoms do sound like how my lupus started when I was in junior high. Nothing too severe at first.

Keep us updated. Just take deep breaths, you'll get through it! If it is Lupus, you have found a wonderful support group here!

DebbieE
05-22-2008, 08:02 AM
Hello busy mom and welcome! It could be many things. When I first went to the doc about my pain, I'd had it for 20 years in my hips, knees, and shoulders; but it had gotten worse and I felt like something had changed. Like yours did with you she asked me about my skin, the "rash" on my face which had been there so long I never paid any attention to it. She had already suspected lupus, but never said the word. Then when I went back 2 weeks later to see my reg doc like she suggested he did a lot of blood work and said it was fibro, but wanted me to come in in 2 weeks. At that time the word lupus came into the conversation. I had always thought it was RA. All I could do was sit there and cry. This was all in January.

When you go see your rheumy take a list with you of all your symptoms over the last several years. My heart does like yours only now I have high blood pressure with a rapid heart rate. Make note of your nose sores, any hair loss, all joint pains, any difficulty breathing. Take notice of any red spots on your skin (I have those), sun sentivity (I for instance occassionaly break out in hives after sun exposure and have for 3 years), just anything that your friends and family members don't have. I have found what is "normal" to me isn't "normal" to other people.

I hope that was helpful to you and that you, unlike I have, find relief soon.

Saysusie
05-22-2008, 10:05 AM
Hi Busymom;
At this point, you need not be so afraid. As Swirlygirl and Debbie have mentioned, you could have Lupus or you could have another auto-immune disorder. All auto-immune disorders are difficult to diagnose and the process can be rather lengthy (especially Lupus, the diagnosis can take up to a year for some). Many of the lab results are similar and many of the symptoms are similar. Also, as is the case for many of us, it is not uncommon to have more than one auto-immune disorder (these are called over lapping disorders). For instance, I have Lupus + Fibromyalgia + Raynaud's Syndrome, and a few others. The treatments for all three can be the same and the symptoms are very similar (especially Lupus and Fibromyalgia).
Debbie E has given you excellent advice about making a list and taking it with you to your next doctor's appointment. Keep a journal of your symptoms; when they feel worse, what makes them feel worse (your activities, food you've eaten, environment you were in), and when you feel better. This will help both you and your doctor to make informed decisions about how to manage your illness, whatever it may be.
I just wanted to point one thing out to you. You are VERY lucky that you've found a doctor who recognizes the symptoms and who, apparently, knows about auto-immune diseases. So many of us have had to go from doctor to doctor (being dismissed, not believed, or told that our symptoms were all in our heads), without any treatment for our symptoms. So many of us have had to go home in tears after trying to convince a doctor that there was something wrong with us and being ignored or treated like a maladjusted, psychiatric miscreant looking for attention, and we get no treatment for our symptoms - so we suffer and suffer until we, literally, fall apart and often have to be hospitalized within an inch of our lives.
In your case, you have already conquered one of the biggest hurdles that many of us face...you have a doctor who believes and knows that your symptoms are real, you have a doctor who will, then, begin to treat your symptoms immediately, who will believe you when you mention new symptoms, and who will know that you are not being a hypochondriac - that everything that you tell her is a true symptom. Please know how lucky you are in that particular arena because, if you do have an auto-immune disorder, it could make the biggest difference in the world for you and your attempts to manage your illness and to life a normal life. Next to having a good doctor, is having a family who are educated about your illness, who understand how the illness affects you and who are supportive and caring. Perhaps this is something that you should start working on now. As I mentioned earlier, many auto-immune disorders are similar and many of us deal with similar emotions as a result of having these disorders. So, you can begin to share your knowledge with your husband and other family members who are important to you.
Because stress is such an enemy to these types of diseases, having a caring and knowledgeable doctor and having informed, supportive family will eliminate some of the most common (and detrimental) stresses that we face! You already have half of that battle won, you should start working on the other half.
Every member of this forum is like a family member to us. We are here to help you in any way that we can. We will provide answers to your questions, comfort when you are confused or frustrated, support when you are feeling down or blue, laughter when you need it and a sense of belonging - always! I'm glad that you decided to join us.

Peace and Blessings
Saysusie

busymom3
05-22-2008, 11:52 AM
Thank you guys so much! It really helped just getting it out there. I haven't really wanted to tell anyone just in case everything comes back fine. I have told my husband and my family.

I really am very fortunate that my doctor was aware of these things. I have seen so many doctors in my medical history. My husband is military and I have to start fresh every few years. When I am seen at the military hospital, I rarely see the same doctor twice. I had seen this doctor once in the past and I remembered that I liked her, so I had to wait 3 weeks to see her. Anyway, I am so glad that I did. The bummer is that she is transferring this summer, and I will have to see someone else. Then, we are transferring at the end of the year, so I will have 3 doctors in one year. It has its advantages, I suppose. :) So, even if I don't like the rheumatologist, I can get a new one of those too. LOL!

Thank you for the advice about keeping a journal. That is a good idea. I will start that. I have just chalked so much up to other things that I just thought everything was normal. One more thing, my sister found out that she has Celiac's last week. After years of being thrown the purple pill, she finally has answers. So, I know, through her, how it feels to be blown off. I am angry for her that no one listened to her. I hope that now she can start healing.

Thanks, again. I really didn't mean to make this one so long. :oops:

Lynn
05-22-2008, 02:11 PM
Hi BusyMom3,

There is a good article on the Lupus Foundation of America Website on Preparing for your Doctor's visit.
Its a good place to start!

Also, keeping a journal is a must! My Rheumy and I go over it at every visit.

sits_inthe_corner
05-22-2008, 04:32 PM
Welcome busymom3

You're on the road to find out, :) we will be happy to keep you company while you run the obsticle course of doctors and tests.

This is a great site for information, warmth and support. :)

Oluwa
05-22-2008, 05:29 PM
Hey Busymom...wow..that was long....smile.. No, not at all..Some of us, we..well, okay, me..I have written pages...

Everyone is telling you such good things. It is hard to ask of something, when you know so little about it.

Keep a pen and paper around and write as thoughts pop up. All questions deserve an answer...and no question is silly.

I just wanted to say we're welcoming you with open arms....glad you stopped lurking and popped in.

Be well...hugs,
Oluwa