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Old 11-21-2003, 08:27 PM   #1
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vrie HB User
Some questions

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Ok, here we go..... It's taken me about 2 weeks to get up the nerve to do this!

My questions refer to a friend of mine and I with some similar issues. We both have mothers and other relatives with lupus and other autoimmune diseases. We are both approx 30 yo.

Her younger sis has reynauds and fibro ( I know that's lupus too!) Her mother has almost every autoimmune you can think of, her grandmother had reynauds and lupus, and more women in her family have others. She has a history of 1st and 2nd trimester miscarriage and hormonal infertility that led (after years of testing) to a diagnosis so far of reynauds and fibro and probably lupus. The women in her family also have a history of miscarriage or jsut "unusually small" families for their time. Her questions involve how to avoid steroids etc for the time being. Also, is there anyone on here that knows about herbal treatments?

As for myself, my mother has lupus, sjogrens, and rhuematoid. She had 2 aunts and an uncle with lupus. We have a list of family medical a mile long! My mother went through over 15 years of being treated for nerves, allergies, you name it before finally getting a diagnosis after surgery. My question is how do you get a doctor to just test you? I have some medical background and do my research. I have some symptoms that match my mother's history:
  • allergies developing after 2nd child
  • joint pain
  • hair loss
  • tired for weeks at a time/alternating with insomnia
  • muscle cramps
  • migraines and dizziness
  • thirsty all the time but no dry eyes
  • always cold, esp hands and feet
  • tired and red in face for days after short sun exposure
I am really bad about going to a doctor. I have a child with medical conditions herself so I see enough that way! I also know that I will most likely be treated like I am crazy or paranoid, so that doesn't help encourage me! Does anyone think I could get a doctor to test my ANA etc for MY peace of mind? If so, how. PS I've already taken names of friends of mine (who have lupus etc) doctors, regular and rheumy. My mother doesn't live here btw, so her doc won't work.

Thank you anyone who answers either of us!

 
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Old 11-22-2003, 10:56 AM   #2
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AngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB User
Re: Some questions

Hello vrie!

Welcome to the board. Its nice of you to not only provide your story- but also your friend's too! It takes a lot of courage to reach out and ask for help.

Since you both have Lupus in your family I would recommend that you are both tested. You really need to take charge of your health- even if you are scared at what you will find out!

You mentioned that your friend's sister has Raynauds and fibromyalgia. The Fibro could actually be Lupus- often doctors mis-diagnose us with fibro when we really have Lupus!!

Please get up the courage to get to the doctor and have yourself tested for Lupus. It would set your mind at ease, and allow you to find out whether you have it or not. By the symptoms that you have posted and the family history that you have it does sound like you are showing the symptoms of it. Lupus can be extremely scary, especially if a family member has it and you have watched them become sick! You are NOT being crazy or paranoid, you and your friend do need to take charge here and get checked out for it. I am glad that you found us here at this board- you will find support, encouragement and love here.. we are all here for you!!

~Angelic

 
Old 11-23-2003, 10:32 AM   #3
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Join Date: Sep 2003
Posts: 45
vrie HB User
Re: Some questions

Thanks for answering Angelic. Unfortunately, I know I should go start this whole process. I am just curious HOW I can get a doc to do the tests. My friend laughed and said "Go to my infertility doc, he'll test anything!" Considering I'm raising 5 kids, I just don't think that'll work-LOL!

Does anyone have any suggestions on herbal for my friend? I've tried to send her here, but she doesn't read well (dyslexia), so I'm relaying answers!
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~V'rie~

 
Old 11-23-2003, 11:55 AM   #4
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AngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB User
Re: Some questions

Hi vrie!!

That is cute about the infertility doctor hahahaha!! I would tell your GP your symptoms- and that your mother's have Lupus and autoimmune problems (this is for the both of you!). If your GP is good, he/she will test you for Lupus right there and then. You could even ask to be sent on to one of the Rheumatologist's that you have said are recommended. As for the herbal thing- it is not proven that herbal supplements actually do work with Lupus- they can HELP but they don't replace the drugs that we depend on day to day. I hope that you guys can find a doctor that will test you- if you need to start over with a new GP then thats what you should do. Any GP that is bright will test you, especially with the family history! Take care you funny girls Maybe I need to see an infertility doc, then I can get my MRI done of my head!! LOL

~Angelic

 
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