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  1. Thread: Update on Rob

    by GoodDog
    Replies
    41
    Views
    3,302

    Oh Rob! I'm so sorry you're having to go through...

    Oh Rob! I'm so sorry you're having to go through this. You're in my thoughts and prayers.
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    8,612

    When this is flaring I can't even let my feet...

    When this is flaring I can't even let my feet touch the sheet. I have to put them on pillows and have them dangling in the air. Nothing can touch them on top or on the bottom. Air is the only thing I...
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    15
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    8,612

    Yes, I have it in my toes and heels very bad. I...

    Yes, I have it in my toes and heels very bad. I can't even have a sheet on them when they're in a flare. Doc said it's neuropathy.
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    3,290

    Oh Sarah!! I'm glad you're back home and please...

    Oh Sarah!! I'm glad you're back home and please post about your doctor's visit. What is he saying he thinks is going on? I'm so glad you have your mother to help you but try to relax and not...
  5. Replies
    405
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    97,520

    Sticky: You know you have brain fog when your nurse says...

    You know you have brain fog when your nurse says you called and talked to another nurse about a med side effect and you say "no, I didn't call" and she thinks you're lying. The harder you try to...
  6. Replies
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    2,435

    I'm right there with you. LOL I didn't remember...

    I'm right there with you. LOL I didn't remember posting there until now that I saw the thread. Wow that is weird! I went in Monday for my weekly infusion and had to talk with the PA. She said I had...
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    I've been diagnosed with SLE,...

    I've been diagnosed with SLE, eosinophilia-myalgia syndrome, arteriovenous malformations (causing anemia), fibromyalgia, delayed pressure urticaria with concomitant idiopathic urticaria, rectocele...
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    5
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    2,790

    Yes, I feel my heartbeat in my ears, neck and in...

    Yes, I feel my heartbeat in my ears, neck and in my head. It makes it hard to sleep. If I just walk across the room my heart rate goes way up and my legs feel like rubber. The muscle pain is terrible...
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    2,790

    Thanks Debbie. Yes, I have an...

    Thanks Debbie. Yes, I have an oncologist/hematologist and I'll ask about that when I go for my next infusion on Monday. Wow, you really had some major problems. I can't imagine having hemo that low!!...
  10. Replies
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    3,290

    The fact that the benedryl not only didn't help...

    The fact that the benedryl not only didn't help but made you feel the way it did is suspicious. Have you taken prednisone before with no problems? The prednisone is the only thing that helps me now....
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    2,790

    My Hemoglobin Keeps Dropping!

    Even with all the infusions I've had my hemoglobin is still dropping. Out of all the blood tests only 3 came back in the normal range! I saw my GP today and she said that it doesn't seem to be...
  12. Replies
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    3,290

    That's the exact reaction I get to all...

    That's the exact reaction I get to all antihistamines now. I took them for years for my chronic hives and never had a problem. Then one day after a surgery they gave me an injection and I thought I...
  13. Thread: The End !

    by GoodDog
    Replies
    35
    Views
    3,209

    Amanda, you're right that many of us have also...

    Amanda, you're right that many of us have also experienced this. For years I had an HMO and one doctor wrote that I was a paranoid schizophrenic and my symptoms were somatic (he's the same doctor...
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    552

    I hope your resting kept you from going into a...

    I hope your resting kept you from going into a bad flare. I've been really sick since my last infusion on Monday. I hope I have the energy to get me there for tomorrows infusion. All I can do is...
  15. Replies
    36
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    3,290

    Oh no, Sarah!!! I'm glad it happened in the...

    Oh no, Sarah!!! I'm glad it happened in the hospital!! Maybe now they will get to the bottom of it and find out what's going on! I'm so sorry and hope you recover quickly. I'm glad you went to a...
  16. Replies
    17
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    1,390

    Since my infusion Monday I've been having some...

    Since my infusion Monday I've been having some debilitating symptoms that seem to be getting worse. I don't know if it's from the infusion or if the infusion caused a flare. The lightheaded feeling...
  17. Replies
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    YEA Mari!!!! What a relief!! I'm so glad you can...

    YEA Mari!!!! What a relief!! I'm so glad you can finally get the care you need and not have to worry as much. Living on SSA is hard but it's doable and knowing how much you'll have every month really...
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    2,246

    I was a type A personality too and always felt I...

    I was a type A personality too and always felt I could depend on my brain for anything that happened in life. If I didn't know something I would simply learn it...whatever I needed to do I just did...
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    I had my second infusion today at the cancer...

    I had my second infusion today at the cancer center. It went well but about halfway through I got a wave of exhaustion to where I could barely push the buttons on my Kindle E-Book. You know the kind...
  20. Thread: Night hunger

    by GoodDog
    Replies
    13
    Views
    1,303

    I haven't had a bad flareup since being on...

    I haven't had a bad flareup since being on Prednisone but I remember when I had one I would crave certain foods, like oatmeal, and that's all I would eat. Nothing but the food I was craving sounded...
  21. Replies
    36
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    3,290

    Oh Sarah!! You need to get to another hospital or...

    Oh Sarah!! You need to get to another hospital or doctor. Something is wrong and needs to be fixed!!! I had a team of doctors and the main one said they all met to discuss my case for over a half...
  22. Thread: Night hunger

    by GoodDog
    Replies
    13
    Views
    1,303

    Since I've been taking prednisone I'm hungry all...

    Since I've been taking prednisone I'm hungry all the time too. I no longer have the full feeling ever, even after eating a big meal. If I wake up during the night I'm also hungry. One evening when I...
  23. Replies
    36
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    3,290

    My stool didn't look like coffee grounds, it was...

    My stool didn't look like coffee grounds, it was the same just dark. The bone marrow test they did on me to check the cells was a blood test not a biopsy. Some AIs can cause the cells not to...
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    36
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    3,290

    Sarah, did they find occult blood in your stool?...

    Sarah, did they find occult blood in your stool? They asked me if my stool had ever been black and I said no but it tested that I did. I would have called mine dark brown not black but now I know...
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    Well that's just inspiring Michele! There isn't...

    Well that's just inspiring Michele! There isn't one close to where I live either but I didn't think about starting one myself.
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