Conversation Between Elo and ritzbit

29 Visitor Messages

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  1. I had such bad headaches a year ago that I had a brain MRI to make sure that my lupus wasnt effecting my brain. Lucky it wasnt but it explained nothing for me. I've had stomach problems my whole life and everyone just thought I always had "tummy aches" alot when I was little. There are lots of ways that it can affect your stomach. If your mainly looking into lupus this a great place to start if you havent looked here yet Everyone thought I was just depressed for years when I was about 12-15 because I was always crabby and tired and stopped wanting to do anything. I hope you find what you're looking for.
  2. It's so stupid that people think that if you're sick with anything other than a cold that you're just a whiner and you should suck it up. As if that wasn't your bodies way of telling you that something is very, very wrong. Or that you're not actually sick, it's just all in your head, and you have to "believe it away". *eyeroll* I didn't know that headaches and stomach aches could be symptoms... those are two of my worst problems as well, but looking on all these sites of symptoms, I never found anything about them. I'll have to find the thread about meds so I can try to learn as much as possible.
  3. There is an entire thread on here about meds lol I'm on more than I would like but I need them because I got really sick a few months ago. I finally went to a rheumy when my fingers and toes started turning purple. They did blood tests and everything was very abnormal and they told me they thought I had lupus. I was always achy and tired and had stomach aches and head aches all the time. But everyone just thought I was a complainer. I suddenly had a cause for everything and had never once thought all those little things were connected! They put me on plaquenil and then that summer I had other problems like swelling and joint problems. I think my symptoms were just progressing, and I bet anything that being on that medicine probably helped me a lot of getting even worse.
  4. I did have some blood tests done - that was actually what finally diagnosed me. As far as telling us what was wrong, that is. I got an ANA, CBC, CRP, and a T4 total. The first doctor I saw took blood as well, and just looked for some basic stuff like anemia, blood count, etc.
    I suppose I always just thought that there weren't many meds or much you could do besides be monitored, until/unless the disease got a lot worse. Woops!
  5. No one wants to take meds especially me but they are needed to keep you healthy with autoimmune problems, no matter what yours might be. The doctor you need to try to see is called a rheumatologist they specialize in autoimmune diseases. Did you have any blood tests with the doctor you have now?
  6. Woah, I didn't know that. :/
    I personally knew I was sick from the very start. It was like waking up one morning and knowing you had a cold, except I didn't know what was making me sick. After a few months I had a huge list of symptoms from so long. I didn't realize that not getting started on this could possibly make it worse. It was a struggle finding a doctor to even believe that I was sick! And since I've found out, everyone's been being really nonchalant about the whole thing - sometimes I think i'm the only one worrying about it, and I wasn't even thinking about organ involvement! Everyone seemed to make it sound like it wasn't such a *huge* deal. I was more of the mindset that I would go as long as possible taking as few drugs as possible, so that when I did choose to pursue them, I wouldn't need as much or it would work better. (Some sort of tolerancy theory). I never imagined it could be the other way around. Eek!
  7. From personal experience I had what I thought was almost no problems at first because I didnt see all the varied problems as being symptoms of anything. But I had more problems I think than I initially realized. Many drugs used to treat lupus and many other autoimmune diseases are not harsh as you said. For lupus, and I think other autoimmune diseases as well, there is a drug called plaquenil and it is our first drug. If the disease isn't very active it may be the only drug needed. I was given it as a preventative drug to make sure this disease didnt begin to attack my organs. That is one purpose of medications; to prevent the disease from getting worse. I wouldnt wait until you get really sick to try to get on some medicine because then you are more likely to need harsh drugs to treat your disease.
  8. Hi there!
    Thanks for the welcome
    My doctor said there wasn't much advantage in seeing a specialist (yet) because most or any of the drugs or treatments would be too harsh for me, since at the moment I'm at a pretty low level. I was told the only thing they'd do is set me up for a bunch of tests and then be able to diagnose me with something concrete. But maybe I should look into it further, I have had a LOT of trouble with Dr's, and I'm really not sure what all they would be able to do for me.
  9. Hey welcome =) I just read your bio and wanted to say that there is definitely ALOT of benefits of seeing a specialist, as this is what they SPECIALIZE in lol they will be able to get you to a diagnosis and get you the medicine you need. Even though you dont have insurance I would try to get in to see someone and worry about the cost later. Autoimmune diseases can be easily treated for the most part, especially lupus, but they can be deadly if your not getting the treatment you need. I dont want to freak you out saying that its just my opinion. And again welcome! =)
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