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Thread: PCP has suggest rheumatologist..thinking it may have been Lupus all along...rash ?s

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    Hi Leslieann

    Often times if ANA is negative they never go any further (such as TITER and such). Negative is all that your report may say. I really hope that that you get some answer soon because the waiting game is always the hardest

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    We've found out the hard way that getting the right diagnosis takes time, patience and research. Maybe you have an autoimmune disorder - maybe you don't. With all the complications you've had with EDS it seems to me that your collagen elasticity disorder could be messing with you. My daughter had severe knee pain for 9 months. It got so bad we had to pull her out of school, she couldn't put weight on that leg, and she would cry in her sleep because of the pain. The MRI was supposedly "negative" but we got copies later and discovered that the radiologist thought it was infected. Long story short, we found a surgeon who did exploratory surgery and found 2 plica (connective tissue growing where it doesn't belong) in her knee that were the cause of the pain. The geneticist who later diagnosed EDS said that happens with collagen elasticity disorders.

    I don't remember - have you seen a dematologist for your rash? If it gets worse again, you should probably push for that. They can take a skin biopsy and maybe get some more information.

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    leslieann,
    my wife has undergone a total knee replacement.
    it was 4 weeks ago yesterday.
    the after operation therapy is very intenseafter you get over that it isnt so bad.

    she still plans on having the second one done in about 2 months.

    i fully reccommend it.
    it is painfull stretching torn muscles, but it is worth it.

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    Quote Originally Posted by leslieann226 View Post
    Well, I just looked online and it says "negative" with no numbers next to "Ana Ifa,W/Refl Titer/Cascade"

    I'm assuming when I get my copy in the mail, the actual numbers with be there...not sure why they aren't online.

    Not sure what to do now. I wrote to my doc so I'll wait and see what she thinks. The swelling was terrible when I woke up this morning and I can't understand that. Why would it get worse while I'm lying down?? makes no sense to me.

    I have an appointment next wednesday with the knee specialist to begin the process of the workup for the knee replacement. I'm thinking he may have some helpful insight. We shall see, I suppose.

    Frustrated right now...and in pain =(
    Hi Leslieann,

    Your copy through the mail should be the same as what your viewing online and we all know the bloods can play up but i just hope you have'nt got it because it's one terrible disease at times and working with meds like other members do for relief is terrible alone.

    I can't get my head around the same issue as you've pointed out my joints are swollen through the day but come more they're alot worse, unless it's to do with heat during the night.

    It's making me wonder if your bloods come back negative again if your re-tested, if it could be possibly RA and it's really playing up bad and try and get your Doctor to send you for a full MRI scan to check your joints as well if possible.

    Love Terry xxx
    Last edited by Peridot20_Gem; 07-07-2011 at 09:14 AM.

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    I talked with my PCP yesterday and she still wants me to see a Rheumy even though the ANA was negative. She said they can be negative at times with autoimmune disorders and that the symptoms are enough for me to need to be seen.

    She said they sent my info to the new doc and they will call me with an appointment date and time.

    I don't want this diagnosis at all but at the same time, if there's something that can be treated and make me feel and function better, I am all for it. I'm pretty shaken right now....my ankles feel hot today and just ache so badly and my knees are huge. Sitting here with ice everywhere as I type.

    Any secrets to helping with the pain would be much appreciated.

    trying to be patient and hopeful,
    Leslie in Pittsburgh

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    Quote Originally Posted by Peridot20_Gem View Post
    Hi Leslieann,


    I can't get my head around the same issue as you've pointed out my joints are swollen through the day but come more they're alot worse, unless it's to do with heat during the night.

    It's making me wonder if your bloods come back negative again if your re-tested, if it could be possibly RA and it's really playing up bad and try and get your Doctor to send you for a full MRI scan to check your joints as well if possible.

    Love Terry xxx

    Terry...

    My bedroom is freezing...always. it's the only way I can sleep. and I sleep with ice on one and sometimes both knees.

    I did have an MRI of my right knee last october. Would an MRI show something like RA?? That was before all this swelling in the four lower joints started though. I had some swelling in my right knee, but not as bad as now.

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    Quote Originally Posted by steve.bryce View Post
    leslieann,
    my wife has undergone a total knee replacement.
    it was 4 weeks ago yesterday.
    the after operation therapy is very intenseafter you get over that it isnt so bad.

    she still plans on having the second one done in about 2 months.

    i fully reccommend it.
    it is painfull stretching torn muscles, but it is worth it.
    Steve...

    thanks for your reply. I am soooo ready for this knee replacement!! I see the knee replacement specialist this week and I'm hoping to do the surgery in September. I'm even open to have both replaced at the same time if he's willing.

    Thanks so much for the encouragement. I'm way too young to have this much trouble walking. Give your wife my best....hope she is doing great!

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    Hi there,

    The MRI question is a good one. MRI are SUPPOSED to show the damage to the knee but often times they do not. Some doctors prefer using an ultrasound on the but it is just doctors preference. Also, you say it was before all of the swelling so there may not have been anything to see last year. It might be time to go back to a doctor and have it looked at. Keep us posted!

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    thanks for the advice. I'm going to a knee doc this week that only does replacements and he will more than likely be doing another one. His secretary also mentioned a possible MR-arthrogram ....not sure if this will show the inflammation, but I'm going to talk with him about both knees and the swelling.

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    with regard to getting both knees done at once.
    my wife was considering it. but it was not really an option.
    the government is paying for her ops. and they refuse to do both together.

    after seeing the rehab, i agree do not do 2 at once.
    you need the support of 1 good leg to help the quicker recovery.
    the muscle is cut to allow access for the operation.
    in the first 6 weeks is when all of the scaring of this cut muscle happens.
    after 6 weeks, if you do not have sufficient movement, the chances of full movement is dramatically reduced.
    one of the other patients who had his operation on the same day as cherie, is about to have his knee reoperated on.
    to cut the scar and break open the muscle, so it can reheal properly.
    having both knees done at the same time, doubles the risk of having this second operation.

    talk carefully to your doctor about this risk.

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