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Thread: chest pain, numb fingers, confusion/swollen ankles & fee

  1. #1
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    Default chest pain, numb fingers, confusion/swollen ankles & fee

    Is this normal for this disease????
    The (very) swollen lower legs, ankles and feet.....what is that from? I can barely walk....and was a professional athlete my entire life....
    I go to my first Rheumotologist appointment tomorrow at UCLA - they have a number of clinical trials there I am told for LUPUS.... they have a number of grants they won to research the hell out of LUPUS......
    too late for me I guess.....hopefully i don't give this crud to my kids...
    can any of you please give me suggestions on what to listen to and what to ask questions of....I have found that if I listen to a group like this...I will be a lot better off than if I go in and just follow everything he says....
    so I welcome any and all advice.....
    thank you
    dakota
    dakota

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    list all your symptoms, even ones that you don't think mean anything. list as much as possible when each one started, or how often they come and go (like migraines, ifyou get them)

    I'm so glad you're able to go to a teaching hospital - you should get good care and have a chance at getting someone who'll talk and listen!

    let us know how it goes --

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    Default thanks hat lady....

    you have been very patient with me....I am sure you recognize all the signs of someone new finding out they have this.... and are rolling your eyes .... (15 years ago) I was diagnosed with a disease called PVNS....anyone here have it I wonder??? I had 14 surgeries/radiation & chemo on the right knee...the tumor still came back...so with that rare and non researched disease I was one of the first members of that worldwide web group and tried to help members aclimate to the fact that they had PVNS and were stuck with it....and I tried very hard to prevent them from making some of the mistakes I did...as with that I DID follow all the doc's advice...and saw later it was not the proper road. I should have never had radiation.....i never realized how much radiation destroys in its path......you never hear that side of the story....most of my continued problem with that knee is as a result of the radiation NOT the disease itself as it destroyed the lymph nodes behind the knee and that creates a horrible problem. So I saved many a person from making that mistake.... and taught them to be bold in talking to doctors....they are just people and they are at the very beginning of figuring things out in the human body...and have a very long way to go....
    much of it is guesswork and going with "odds" .....like this treatment has better "odds" than that one.....when there is NO cure for something...I found this true across many different illnesses back when I was involved with that disease...I am even thinking that the development of PVNS was the beginning of when LUPUS must have started within me....I would assume we are born with it.....and its just a matter of when it surfaces...PVNS was discovered by my RHEUmotologist also....so I bet there is a connection...what do you think? have you heard of anyone that has or had that? It is a tumor of the synovial lining of any joint....hip, wrist, ankle all of them....mine is in my knee the most common place for them. You see a Orthopedic Oncologist for treatment and I had one of the best at USC....he removed it twice...it just grows back...his next reccomendation was amputation....a lot of people have had the amputation....I will NOT....go that route.....I NEVER went back. I did a lot of explaining of all that on the PVNS website...I believe if I hadn't had the radiation I wouldn't be in such pain...the swelling is a major problem....as one cannot stand for any length of time...
    And now this.........
    I've been told and believe highly in the good Lord......and they say he does not give anyone MORE than they can handle......
    But. . . . . . . .
    sometimes I wonder if he is paying attention......to a little soul in California...
    If I turn down the sterioid treatment....the side effects sound atrocious....what woud you think of that decision?I realize this is just your opinion but that is what i want....i want present Lupus sufferers opinions....I cherish THAT more than I do what the damn doctors have to say..... they all just follow a protocol that someone had some "good luck" with....and that is about the extent of it. Until a new drug is uncovered....
    so what do you think>?
    do you take the cellcept?
    what do you think of that?

    I appreciate your help and assistance...I really do......
    hopefully we will all benefit from something one of us uncovers....
    that is what is the single most important part of this wonderful thing called the:
    I N T E R N E T !!!!!!
    I love being able to research this crap and not having to just listen and follow what the MD's tell you..... one of my best friends is the Chief of Cardiovascular Medicine at USC....and he never could figure out what was wrong with me....for the past 5 years that I have known him.....with my chest pain he was sure I have something called Syndrome X..... he did not know that chest pain is a very common complaint of LUPUS patients ....he is known as the ace crack pot diagnostician for USC and all of their hot shot celebrity and political patients ( he takes care of many governors.senators and our vice president!).
    never occured to him that it could be anyhwere close to that area.....
    scary huh?

    i ramble and ramble.......but I fully appreciate your interest and your help.....
    THANK YOU
    again.............
    Dakota
    dakota

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    Wow Dakotablue, you've been through alot already. No, I did not roll my eyes, I doubt anyone here did. We've all been there and truly understand.

    I have not heard of PVNS - sounds painful and scary. Thanks for the description of what t is. I used to work at a hospital that had an oncology unit and radiation therapy. Over the course of time and experiece with family and friends, I too came to look a bit critically at radiation as a treatment -- it hurts too much of the surrounding tissue. The lymphatic system seems so vulnerable to damage. When the cure is worse than the disease you have to choose carefully, but getting teh full information seems so impossible. Good for you for helping others!

    I think many conditions are related - who knows what triggers what, or why it occurs at a given time. Acceptance doesn't always come easy, but soooner or later, I think it usually does.

    Hugs dear, and keep posting. Tell us what PVNS stands for too please?

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    Wow Dakotablue, you've been through alot already. No, I did not roll my eyes, I doubt anyone here did. We've all been there and truly understand.

    I have not heard of PVNS - sounds painful and scary. Thanks for the description of what t is. I used to work at a hospital that had an oncology unit and radiation therapy. Over the course of time and experiece with family and friends, I too came to look a bit critically at radiation as a treatment -- it hurts too much of the surrounding tissue. The lymphatic system seems so vulnerable to damage. When the cure is worse than the disease you have to choose carefully, but getting teh full information seems so impossible. Good for you for helping others!

    I think many conditions are related - who knows what triggers what, or why it occurs at a given time. Acceptance doesn't always come easy, but soooner or later, I think it usually does.

    Hugs dear, and keep posting. Tell us what PVNS stands for too please?

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    Default sorry

    thanks you.....PVNS Pigmented Villonodular Synovitis.....you should see doctors when i rattle that off....even good ones have never heard of it...they all scratch their heads...........its silly.......
    it sounds as though some of the people here are using chemo.....is that a new and successful approach that you know of?
    Without having to go thru all the research my self....are any of the new fangled treatments worth trying ...honestly?

    I appreciate your help...... do you take prednisone? I just do not want to take that....what info can you give me about it...that will help....
    dakota

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    hey Dakotablue,
    i'm 17, diagnosed with lupus nephritis a year ago. I take both Prednisone and Cellcept, the most significant side effect of Prednisone I have is called Cushing's syndrome, these are red stretch marks I have around my waist. Also, I have gained some weight since I started taking it. You start with a high dose, 1 mg per kilogram body weight then your doctor should reduce it gradually. I started with 60 mg and now I only take 5 mg daily.
    Here is a link to some info I found about it, thought it might be useful:
    http://www.lupus.org/education/brochures/steroids.html

    And about Cellcept, it causes your white cell count to fall so I had to do blood tests every month and the dose was changed several times, but I've been on 1500 mg / day for a few months now with good blood test results. I guess it's a good drug coz I haven't flared for the past seven months or so and the doctor told me that missing a dose might have serious health problems so its important in controlling your lupus condition once you start taking it.

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