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    Old 06-30-2010, 07:39 PM   #1
    Whoknew7
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    Question Scared

    Hello all

    im new here but after viewing the threads it looked like a good place to get answers from friendly peps.
    Let me start by informing you that my mother has lupus, RA and raynauds.
    Last week i went to the dr for my carpal tunnel(self dx) after speaking to my dr about my mother i was advised i should have blood work done.ong story short i was informed my ana-ifa came back positive 1:160.

    Fatigue has been an issue for some time and below is a list of my on/off issues.

    Hair loss
    Blurred vision
    Irrital bowel
    Fatigue
    Aching flu like
    Wrist arms &shoulders
    Weight
    Headaches
    Pain in hands when getting drink(weight of cup)
    Timgling/numbness in fingertips when im cold

    am i just a baby?
    Have an appt with a rhumy in 3 weeks. Any opinions or advice would be appreciated as im scared. Ive seen what moms dealing with

     
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    Old 07-01-2010, 07:54 PM   #2
    Whoknew7
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    Re: Scared

    Wow i guess maybe ive come across wrong being that several have read my post yet no advice or anything. Im just concerned about the results and thought someone may b willing to give their opinion. I guess i should have noted my concern is mainly because i am my mothers only caregiver.

    Best of luck to all on here as ive seen how scary this illness is.

     
    Old 07-02-2010, 01:44 AM   #3
    sk84life
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    Re: Scared

    Please realize that not getting a response immediately does not mean people don't care! We are just everyday people, not medical experts and rules of the forum do not allow us to diagnose....

    I can understand your anxiety with having a Mom with autoimmune disease. You have done the right thing by having some initial testing. The positive ANA just says that something might be going on. The rheumotologist will be the best person to put everything into perspective and will probably order a whole bunch of lab work......but he will need to know your complete history and do a physical exam. Getting a working diagnosis will take time which is hard when you are worried.

    Be glad you have the rheumy appt. in only 3 weeks! Many people have to wait 3 months to get one! In the meantime, read the stickie notes at the top of this forum to learn more about lupus and talk with your Mom about her journey.

    In the meantime, read about 'preparing for appt. with rheumy,' try to write your own history, when you first noticed symptoms, what you did to make them better/worse, etc., and get copies of your lab work from your doctor.

    Not feeling well can be stressful! We know that and are here to support you.

     
    Old 07-02-2010, 03:51 AM   #4
    VeeJ
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    Re: Scared

    Who Knew, hi & welcome. No, you're NOT being a baby; you're being smart. My symptoms were similar to your list, except no blurred vision; and in addition I had urinary problems, menstrual problems, depressed WBC, elevated sed rate, low-grade fever, anemia, and recurrent photosensitive rashes that didn't resemble the two most famous lupus-specific rashes (malar and discoid).

    Whether you have lupus, only a qualified specialist can say. But before your appt. you can do some things to prepare...

    1. Read basic info. Those "sticky posts" at the top of the thread list describe lupus symptoms, also its very strict diagnostic criteria. There's also info on APS, a blood clotting disorder seen in lupus, or seen on its own. (APS can cause headaches, clots, strokes, miscarriages, etc.) Also a fascinating list callled "alternative criteria" that lists problems that often occur in people who later go on to develop lupus. Also user-friendly books on lupus.

    2. Prepare a brief *lifetime* medical history, to have it ready to discuss when asked. Make sure dr. has access to recent labwork.

    3. Understand that a Dx of lupus may not come quickly. You'll see from the diagnostic criteria that you generally must meet at least 4 of the 11 at some time, meaning not necessarily simultaneously. Some people take years to evolve, plus most drs. like to see each criteria WITH THEIR OWN EYES.

    4. And understand that lupus can be very hard to distinguish from other conditions, like rheumatoid arthritis, Mixed Connective Tissue Disease, Undifferentiated Connective Tissue Disease, etc.---plus a number of conditions outside of rheumatology.

    5. Optimally, bloodwork done will be much more extensive than the diagnostic criteria suggest. Why? Although only several autoantibodies appear in the criteria, there are actually many more possible in lupus that don't "make the list" because they're less "specific" than the ones cited. From here on out, you should request copies of tests, and keep them in your own file.

    Are you seeing the same rheumatologist your mom sees? Have you had anything else that could be useful diagnostically? (My rashes, when properly biopsied & then tested with immunfluorescent stains, were helpful.)

    I was scared, too but felt great relief immediately knowing improvement was possible. Good luck getting a good head start at during your appt. Post more when you can, OK? Best wishes to you, and your mom, too, Vee

    Last edited by VeeJ; 07-02-2010 at 03:52 AM. Reason: spelling

     
    Old 07-02-2010, 07:25 AM   #5
    Whoknew7
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    Re: Scared

    Wow
    First let me say thank you!!
    Reading your post was helpful and reminded me of some medical things i would have never thought could be related. Menstral issues, Depression and a TIA 4 years ago. I will be working with my pc's to get copies of everything now.
    My momma (yes i am a momma's girl) did not get a DX until a year ago and was imformed that her rhumy has never seen such a progressive case. I want to be able to do everything I can for her. Shes Amazing!!!
    I really appreciate you guys and i guess i just needed to know that its not all in my head. 

     
    Old 07-02-2010, 09:00 AM   #6
    VeeJ
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    Re: Scared

    WK, do scan some of those books if you have time before your appt. You'll be stunned at the sheer variety of possible problems.

    It took me YEARS to sense that my problems were interconnected. Only after new problems piled on in my late 30's did I start to wonder. Next I realized sun was a probable trigger for rashes & all other, so I announced all this to my GP. Now you'd have thought he'd have thrown out some possibilities, right? Nah. He kept silent but sent me for kidney function tests, during which the radiologist blurted out their #1 suspicion. (Why such unwillingness to communicate bluntly, to an ADULT of my advanced years, I'll never know...)

    It IS crazy-making... but you're starting out a whole lot smarter than a lot of us did, I bet. Post updates when you can, OK? We'll cross our collective fingers that you get professional insight & help soon. KEEP AT IT! Hugs, Vee

     
    Old 07-05-2010, 05:52 AM   #7
    Whoknew7
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    Re: Scared

    Sorry Vee didnt mean to ignore your question. I tried to get an appt with moms rhumy but she is no longer accepting new patients.

    Will the first appointment just be a bunch of lab work? The paperwork they sent me said expect your first appountment to be 3-5 hours.
    Could this also explaine the pain in my armpits? My GP ordered an ultrasound and said that nothing was wrong? This was aprox 4-5 months ago but the pain to touch is still there. Not that i go around with my fingers in my pits.  just noticed it when shaving or putting on deoderant.

    Hope all is well
    God Bless

     
    Old 07-05-2010, 06:22 AM   #8
    VeeJ
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    Re: Scared

    WK, I envision a good first appt. as including the rheumatologist taking a complete lifetime medical history, physical exam, bloodwork & urinalysis, maybe X-rays (if rheumatoid arthritis, etc. are candidates), maybe a bone density (if you've never been checked for osteoporosis), maybe some immediate referrals to other specialists (for you, possibly a neurologist?), ETC. Also extra time to fill out that 100-page intake form for new patients.

    When is your appt? We're thinking of you & looking forward to hearing about your progress. May this be the start of a better chapter in your life! Hugs, V.

     
    Old 07-05-2010, 06:48 AM   #9
    Whoknew7
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    Re: Scared

    Thank you so much!
    Appointment is set for 7/15. Trying to get all i can as far as past medical records. Thanlfully they sent me the packet of papers to fill our beforehand so maybe that will help.

    Will keep you informed
    Take care!

     
    Old 07-05-2010, 12:22 PM   #10
    angelic831
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    Re: Scared

    Hi, sorry to hear you are feeling so scared. Try not to think the worse. Wait until you get a definitive answer then ask question and go from there. Because your mom has Lupus does not mean your symptoms will be exactly like hers. You are only going to worry yourself sick if you think this way. I have Lupus also and I really don't think about the negativity that goes along with this disease. I started getting symptoms 10 years ago. I did not get a definitive answer that it was lupus until 2 years ago. Nothing was conclusive until then. In the 10 years I have had 3 flares and they weren't super bad. Try to continue with your daily life, exercise, meditation. Try not to let this consume your life and happiness. There are lots of treatments out there that can help you before syptoms get worse.

    Take Care

     
    Old 07-05-2010, 07:44 PM   #11
    Whoknew7
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    Re: Scared

    Thank you so much!
    Yes you are correct, i need. To stop with the worring!
    Mom has has 3 bad flares in the last 6months. Its hard to stay grounded when shes so bad off. Hopefully whatever it is we can get it in check soon

     
    Old 07-16-2010, 09:18 PM   #12
    Whoknew7
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    Re: Scared

    Update...
    Well i had my first rhumy appointment. NOT impressed with the way I was treated!! He came across very rude.
    He told me that all my problems are due to lack of sleep and said that I need to start on anti depressants and flexril for fybromialgia. He said that fibromialgia is basically lack of good sleep that wears you down and then you get pain and fatigue. He did do blood work and told me to come back in 6 weeks.
    I understand that all this takes time but its difficult to stay positive when your told that your just tired.

     
    Old 07-17-2010, 04:51 AM   #13
    VeeJ
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    Re: Scared

    Whoknew, gee, I'm sorry to read your update. Like you, I've never heard that the root cause of fibro is lack of sleep. Like you, I've never heard that fibro is believed to cause certain of your problems, like your TIA, rashes, and hair loss. Of course I'm only a patient, but one does wonder!

    In my opinion, few doctors communicate well. Worse, they can make up their minds too quickly, without scientific evidence. Anyone with a condition that flares/recedes and is multi-faceted doesn't need a dr. to make up his/her mind in a heartbeat.

    In my travels, I met only two drs. whose words struck me as totally "real". One admitted simply, "I don't know yet", which I considered valid. The other, the rheumie I still see, went much further. He handed me a script on which he'd scrawled four preliminary guesses, then assured me if none panned out, he'd come up with more until he figured it out. Him, I respected immediately.

    Nonetheless I hope you keep that followup appt. in 6 weeks, at least to get your test results. BTW, did you have a rash at the time of the 1st appointment? Bye for now, with my best wishes, Vee

     
    Old 07-19-2010, 11:58 AM   #14
    Whoknew7
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    Re: Scared

    No i did not have a rash at the time. I did call today and request a call or a copy of my lab work. Maybe that will shed some light on whats going on.

    Hope all is well with you

    Pamela

    Last edited by Whoknew7; 07-19-2010 at 11:59 AM. Reason: Spelling error

     
    Old 08-03-2010, 04:50 AM   #15
    Whoknew7
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    Re: Scared

    Sorry for the wait on the bloodwork. Momma has been in the hospital so I had to take a break.
    My ana came back 1:80
    ra factor 21 h
    I really dont know what else to
    look for.
    Vit D was 19 so he put me on 50000iu a week for 12 weeks.
    Still lost and still confused

    Mom now has sclorderma and pneumonia. She has lost 90 lbs in 9 months.
    Any prayers would be appreciated

     
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