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Thread: Very confused...either i have lupus or i don't....which is it

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    Default Very confused...either i have lupus or i don't....which is it

    I am writing in hopes that someone can make sense of my situation. I am a 41 year old female about 5'4 and weighing 135. Wow that was hard to write...my weight that is Anyway, about 16 months ago I was in a car accident and had 3 herniated discs in my back from the accident. About a week after my accident I noticed that my feet were turning white and blackish color. My toes and my soles of my feet. As time passed I noticed my finger tips to do the same. I thought for sure it had something to do with my back or my spinal cord because the herniation was touching the cord. I went to my heart specialist because I was having major dizzy spells and changes in my heart rate. He tested me for 45 minutes and told me that my heart pulse was 20 points off from each arm. The only way he could find my pulse in my feet is through a doppler. I had him pretty scared. He actually thought I had a torn artery from the accident. So I had a ct done and my artery was fine. He then called a friend of his while I was in the room to ask advise. The friend was a Rheumy. He advised him that he thought I had an auto immune disease...possibly lupus. He then immediately ordered blood tests. A few days later he called to tell me he believes I have lupus. That my ana was positive and some of my other blood tests were off. He scheduled me to see a rheumy the next week. I went to the rhuemy and she did her own blood tests and they came back fine. I have been diagnosed with RAynauds and Fibro. I have been seein that rheumy for 1 year now and she has ordered ana tests off and on and they all came back negative. I just met with her yesterday and she said that my raynauds looks like its getting worse. What she then said kinda scared me. She told me that some doctors would have told me that I have lupus, but she is struggling to diagnose me with that yet because of my blood tests. She then told me the blood tests can take up to 7 years to show a positive. She told me I will just have to be on a watch and see. In the meantime, there were some lesions on my brain that my neurologist said was not ms but could be from the lupus and that because the medicine that they would give me for lupus is so bad that it wasn't worth it for what my symptoms are. My concern is...I have become a brain full of goo. I am afraid that I will get more lesions and be more spacy and DUMB! I can handle the raynauds, and the major pain, but I cannot handle losing my thoughts or intelligence. Does anyone know anything about any of this? Does anyone else have lesions? Has anyone else been diagnosed with 1 positive and 3 negative ana's??? Any help would truly be appreciated. I am so confused and don't know what to do. My rheumy says she doesn't deal with the lesions??? But my neurologist says that the rheumy deals with the lupus????????????????? HELP please!

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    Welcome to the merry go round that we call getting a diagnosis. As sad as it is to say, many of us have been through this and it is the WORST place to be.

    My advice to you is to first take a deep breath. My second piece of advice is to find a different rhuemy.When you are looking for one I suggest looking for one that treats more than just Lupus. There are 63 AI (Auto Immune) diseases and you already have a couple. Some of the first line drugs for Lupus are not that dangerous and if you have it you may need to be on something. As for the tests coming back positive and then negative that is normal too. These things happening to you are the reason that some of us go weeks, months or even years without being diagnosed.

    . If the neuro has looked at the MRI and is sending you to the Rhuemy then it sounds like he doesn't think the legions are MS legions (and we all have things that can appear as "white masses" to the untrained eye. Try to relax a bit but I really do suggest finding another Rhuemy,
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Thank you Tgal. I appreciate your reply. No he doesn't think it is ms but says it could be from the Lupus. Do you know how that is?

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    Hi Ronnie,

    I personally have not heard of brain lesions with Lupus.
    I would get a second opinion from a Rheumatologist. As far as I know, Lupus and Raynauds go hand in hand, at least alot of times.
    Most people here, who have been diagnosed with Lupus, have brain fog, some days mine is very bad and some days it's not even noticable.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Thanks Debbie. I believe the brain is affected through the central nervous system and that lupus can affect the cns??? I did see another rheumy that my pcp referred and he thought it might be crest but blood tests didn't show yet. He said undifferentiated connective tissue disorder. So confused Actually I have been very lucky because both were very nice and want to keep an eye on me every 3 months.

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    Hello and welcome to our family. First, it is not uncommon for persons to develop lupus after a traumatic experience, such as a car accident. What you are going through is not uncommon either, there are quite a few people who have all of the symptoms of the disease, but no lab work to confirm a diagnosis. There are also many who have been diagnosed with Lupus but maintain a negative ANA. In fact, there is a category of the disease called ANA Negative Lupus.
    The lesions in your brain are one of the symptoms of Lupus that are quite common. There are several ways that lupus can affect the brain and further testing would have to be done in order to determne the exact cause of your lesions.
    I am not surprised that your rheumotologist is reluctant to give you a diagnosis, they seem to be notorious for that. However, even in the absence of a diagnosis, you have the right to demand that she treat your symptoms. If further testing is needed to determine the cause, then she should run the test so that appropriate treatment can be prescribed.
    I wish you the very best and...again, welcome.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    My ANA always comes back negative, I have had many tests over the last 2 years, only thing they ever find is elevated proteins, my rhem says I have negative ana lupus and sjogrens, I have had symptoms all my life but never thought anything was wrong until I got a rash on my face about 3 years ago that would not go away, I do know that lupus play havoc on blood tests. hope this helps -Gary

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    Welcome to our Family! I too know how you feel. On the other side of things if the drs handed out drugs on a suspicion then that would cloud the diag. My neuro has stated for years that she didn't want me to take drugs until I have a clear diag and it would be multiple ai. I have recently been diag with Lupus and fibromyalgia, but I am still being investigated for other. I have recently been put on plaquenil and that is slowly helping. It is hard being patient but in the long run so much more long term beneficial. Hope this helps.
    Desley
    For every dark cloud there is a silver lining!
    Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

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    Hi Ronnie,
    Welcome to WHL. As others have told you, we have all been on the diagnosis merry-go-round. It never seems to stop.
    Please be sure to read the stickys at the tops of each of the fora. They can answer a lot of your questions. Also, read through any of the old threads that interest you.
    Join in and ask questions, too. There is usually someone hanging around to answer them.
    Hugs,
    Marla

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    Thank you to all of you for the replies. It is truly appreciated. My Rheumy told me that there isn't anything she can give me that would slow down the progress or make it go away. That the only she can do is try and help with the symptoms. Is that true?

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