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Old 03-31-2010, 07:18 AM   #1
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Where do I belong? newbie

My name is Tina, and I'm living in daily pain. I have Chiari Malformation. The surgery for that really did a number on me, but things are getting worse now. I'm pretty sure I have Ehlers Danlos because my knees and jaw are constantly popping out of socket. But now I'm worried I may have Lupus. It started with the middle finger of my right hand swelling up and staying horribly painful for several weeks. Everyone assumed I injured it, but I know I didn't. Then I had several weeks of low grade fevers in the evenings after I got home from work. 1 day my husband noticed that my foot/toes were blue. Then my elbows, wrists and thumbs started acting up. I looked all this up online and it kept coming back to Lupus. I have the facial rash at times, I always thought I had rosacea. Right now I have a speckled rash on my chest. 7-8 years ago, I had several miscarriages, and my doctor found that I had a +ANA, +APA, and MTHFR gene mutation. No one was positive which was causing my miscarriages, so when I became pregnant again, I went on heparin and baby aspirin and now have my beautiful daughter. Does this sound like Lupus to you all? My primary care dr is pretty good at dismissing me, so who should I see? I'm so tired of living in pain! I see a neurologist for Chiari, but he doesn't want to hear about anything but my headaches.

Thanks for any advice.

Tina

 
Old 03-31-2010, 07:22 AM   #2
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Janaly HB User
Re: Where do I belong? newbie

Quote:
Originally Posted by emsmomtina View Post
My name is Tina, and I'm living in daily pain. I have Chiari Malformation. The surgery for that really did a number on me, but things are getting worse now. I'm pretty sure I have Ehlers Danlos because my knees and jaw are constantly popping out of socket. But now I'm worried I may have Lupus. It started with the middle finger of my right hand swelling up and staying horribly painful for several weeks. Everyone assumed I injured it, but I know I didn't. Then I had several weeks of low grade fevers in the evenings after I got home from work. 1 day my husband noticed that my foot/toes were blue. Then my elbows, wrists and thumbs started acting up. I looked all this up online and it kept coming back to Lupus. I have the facial rash at times, I always thought I had rosacea. Right now I have a speckled rash on my chest. 7-8 years ago, I had several miscarriages, and my doctor found that I had a +ANA, +APA, and MTHFR gene mutation. No one was positive which was causing my miscarriages, so when I became pregnant again, I went on heparin and baby aspirin and now have my beautiful daughter. Does this sound like Lupus to you all? My primary care dr is pretty good at dismissing me, so who should I see? I'm so tired of living in pain! I see a neurologist for Chiari, but he doesn't want to hear about anything but my headaches.

Thanks for any advice.

Tina
Welcome to this board and forum. I am not going to comment on your
post as I am not knowledgeable about your topic. But I am sure those who
are, will be by soon to chat. Have a nice visit and enjoy your time here.

Janaly

 
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Old 04-01-2010, 05:02 PM   #3
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Re: Where do I belong? newbie

Emsmontina, hello & welcome. I'm so sorry to read about your ongoing problems. Have you seen a rheumatologist? That's the specialty best versed in lupus, antiphospholipd syndrome, and close cousins. And have you seen a dermatologist for your facial & chest rashes? Dermatologists can be the other specialists who could Dx something in this arena... or contribute to Dx.

Have you read the sticky posts? Look at the top of the thread list for these permanent infomational posts. Read 'em all, is my reco. Next, local library!

Obviously I'm only a patient, but I do hope this helps a little. Please post more soon, OK? Warm wishes, Vee

P.S. Congratulations on your baby daughter, and best wishes for your happiness together!

 
Old 08-11-2010, 06:40 AM   #4
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Doina HB User
Re: Where do I belong? newbie

Quote:
Originally Posted by VeeJ View Post
Emsmontina, hello & welcome. I'm so sorry to read about your ongoing problems. Have you seen a rheumatologist? That's the specialty best versed in lupus, antiphospholipd syndrome, and close cousins. And have you seen a dermatologist for your facial & chest rashes? Dermatologists can be the other specialists who could Dx something in this arena... or contribute to Dx.

Have you read the sticky posts? Look at the top of the thread list for these permanent infomational posts. Read 'em all, is my reco. Next, local library!

Obviously I'm only a patient, but I do hope this helps a little. Please post more soon, OK? Warm wishes, Vee

P.S. Congratulations on your baby daughter, and best wishes for your happiness together!
Chiari can cause horrible headaches. I do not understand about your surgery. How did it go? Did you have headaches before surgery? I have horrible symptoms too and you might not have lupus.

 
Old 08-11-2010, 09:09 AM   #5
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Re: Where do I belong? newbie

Hi Emsmom

I would echo everything that Vee said. Push to see a rheumatologist. If you read through the posts on this board, lots of us have been dismissed (time after time after time). It sometimes can take years to be correctly diagnosed, but if you're working with someone who knows autoimmune diseases and is patient, you're going to be better off. I actually have a great PCP who listened and was willing to refer me without any problem.

Good luck in your quest for answers. Be persistent and educate yourself. Write stuff down...keep a binder of your test results and medical record.

All the best to you,
Michelle in CA

 
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