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Thread: New to this forum not new to immune diseases

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    Default New to this forum not new to immune diseases

    Hi all I am Ginlyn
    In 1994 I herniated a disc in my neck, Since then I have been diagnosed with Degenerative Disc Disease in my neck from c3-t1, and Degenerative Disc Disease in my low back l4-l5. I was diagnosed originally with Fibro in 2000 because that was before the joint problems I then went back to Rhuemy who did not want to listen about joint problems and work for a new diagnoses. Found a new Rheumy the best who has since retired who listened to me, she dropped Fibro Dignoses to RA diagnoses on 9/11/2001. I have been trying to find a new Rheumy since then they are hard to find. I have since realized that a lot of my symptoms match more to Lupus then RA, Anemia, Rashes especially after being in the sun, except that I have rashes all the time on my hands, on the palm side on both hands on the palms, fingers with swelling, I have joint problems in my hands, swelling and stiffness, pain in both hands, wrists and knees and elbows. Sun sensitivity, my rashes on my hands get worse and then I get the butterfly rash on my nose and checks, and upperchest, some disc shaped rashes on my arms those are not all the time. Lesions in my nose or sometimes in my mouth. Fatigue, Muscle pain in my upper arms. I think that is all, So I am still on the Hunt for a new Rheumy who knows Lupus. To me that diagnoses scares me some, I had a 2nd cousin that died of complications of Lupus after have it for over 30 years. Thats it for now
    Ginlyn

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    Hi Ginlyn,

    First I want to welcome you to your new family. I am a relatively new member here and I feel like this is my extended family.
    I hope that you can find a new rheumy, that will listen to you and will do what it takes to get you help with your problems. It is very possible that you have both, RA and lupus. I have both, plus fibro and I am going to be checked for raynauds, scleroderma and sjrogrens. I am looking for a new rheumy as well, because mine is in such a hurry to get me out, he is dismissing my complaints, saying " that is normal with lupus, or that's lupus for you." I understand, that we don't have enough specialists and that they are very busy, but when I finally get in to see him ( after waiting for 3 months), I want to be able to talk to him and he should listen to me and help me.
    Good luck to you.

    Debbie

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    hi ginlyn,

    welcome to our little world-wide family of the sky....you will find so many people here who are certainly familiar with your situation, and who have incredible knowledge about our issues.

    i am so sorry you are having trouble finding a rheumy...please keep trying, a good dr. is a crucial member of your team. As debbie said, you can actually have several overlapping diseases and syndromes....it is common for these to attach themselves to lupus. I suffer from lupus, fibromyalgia, RA, sjorgen's and raynauds....all are difficult to handle alone, and are really trying as a group.

    i was diagnosed with fibromyalgia in 1996, in 2008 lupus was ADDED to the diagosis...fibro was not eliminated. I too suffer a lot with paind in my hands and wrists, redness in palms, etc. I really feel the fibro in my connective tissues around various joints, i can tell it is not in the bone, but in the small conntective tissue around the joint. In other areas of the body, the pain is truly in the bone/joint. i have learned to tell the difference and this helps my dr. in diagnosis and treatment.

    so, explore around this site, ask questions, learn as much as you can about the various auto immune diseases, and search for a dr.

    good luck, glad you found us.
    Phyllis

    share a smile today

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    Welcome Ginlyn!
    Sorry to hear about all the things you have gone through in the past few years. I know getting Lupus as a diagnosis is scary but once you are diagnosed then you can start treatment. As far as your cousin...that is a long time to live and endure Lupus. My great grandmother on both sides (father/mother) had Lupus and both passed on in there late to early 90's. I don't think from complications of Lupus at all. Lupus varies in all of us as so pleaes don't think the worse...think positive. It is not a death sentence.
    Again welcome and I wish you health!

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    Quote Originally Posted by debbie-b View Post
    Hi Ginlyn,

    First I want to welcome you to your new family. I am a relatively new member here and I feel like this is my extended family.
    I hope that you can find a new rheumy, that will listen to you and will do what it takes to get you help with your problems. It is very possible that you have both, RA and lupus. I have both, plus fibro and I am going to be checked for raynauds, scleroderma and sjrogrens. I am looking for a new rheumy as well, because mine is in such a hurry to get me out, he is dismissing my complaints, saying " that is normal with lupus, or that's lupus for you." I understand, that we don't have enough specialists and that they are very busy, but when I finally get in to see him ( after waiting for 3 months), I want to be able to talk to him and he should listen to me and help me.
    Good luck to you.

    Debbie
    Debbie b
    I understand what you mean that I had a Rhuemy also that you were lucky to see and talk to for 2 minutes. The last time I saw one of my last Rheumy on October 31st I felt dismissed and that was the last time I went to her.

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    Quote Originally Posted by mountaindreamer View Post
    hi ginlyn,

    welcome to our little world-wide family of the sky....you will find so many people here who are certainly familiar with your situation, and who have incredible knowledge about our issues.

    i am so sorry you are having trouble finding a rheumy...please keep trying, a good dr. is a crucial member of your team. As debbie said, you can actually have several overlapping diseases and syndromes....it is common for these to attach themselves to lupus. I suffer from lupus, fibromyalgia, RA, sjorgen's and raynauds....all are difficult to handle alone, and are really trying as a group.

    i was diagnosed with fibromyalgia in 1996, in 2008 lupus was ADDED to the diagosis...fibro was not eliminated. I too suffer a lot with paind in my hands and wrists, redness in palms, etc. I really feel the fibro in my connective tissues around various joints, i can tell it is not in the bone, but in the small conntective tissue around the joint. In other areas of the body, the pain is truly in the bone/joint. i have learned to tell the difference and this helps my dr. in diagnosis and treatment.

    so, explore around this site, ask questions, learn as much as you can about the various auto immune diseases, and search for a dr.

    good luck, glad you found us.
    So I have a question Phillis the constant red rash on my palms and fingers is partofthe Lupus? I have had this for as longasI can Remember. I asked one of my former Rhuemys what that could be from she said she did not know. She asked me why I have anemia? and told memy ESR is 3 times higher then it should be. Now you know why she is a former Rheumy.
    Ginyn

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    Quote Originally Posted by dsunshine View Post
    Welcome Ginlyn!
    Sorry to hear about all the things you have gone through in the past few years. I know getting Lupus as a diagnosis is scary but once you are diagnosed then you can start treatment. As far as your cousin...that is a long time to live and endure Lupus. My great grandmother on both sides (father/mother) had Lupus and both passed on in there late to early 90's. I don't think from complications of Lupus at all. Lupus varies in all of us as so pleaes don't think the worse...think positive. It is not a death sentence.
    Again welcome and I wish you health!
    Thank you dsunshine

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    Default Hi Ginlyn and welcome!!

    This is certainly a difficult disease to diagnose and manage. Just when you think you have the symptoms on the run, another flare.
    A good rheumy is so hard to find. I am still on the hunt for one that believes I am having a flare despite the "normal blood tests for someone with lupus". My current rheumy does not believe in the fibro diagnosis and feels that this is a diagnosis used when a doctor does not know what is wrong with you. Hence, my search for a new rheumy.
    I hope you get some answers soon. At least then you can move on to treatment!!

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    hi ginlyn,

    i sent you a PM answering your question about the red rash....let me know how you are feeling.
    Phyllis

    share a smile today

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    Default hi

    Just to say welcome to the forum and so sorry to hear of what you are going through.Hopefully we can all help you through this ....here...and chatting to each other...i find it helps to me...to get through my day.

    lots of love
    Angel.xxxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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