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Thread: Possible Lupus, Please Help Me!

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    Default Possible Lupus, Please Help Me!

    Hi everyone, sorry if this is the wrong area for this post. But I'm miserable and feeling quite at the end of my rope... so please read this, even though it's long.

    It all started with shaky hands. At first (May-October 2009), it came and went. Then sometime around Christmas í09, it was here to stay. At first it was only a low level tremor, which was made worse with stress or anxiety. But some days it would be bad just on its own. By the time April 2010 rolled around, the shaking had increased to a daily thing. It made playing my flute very difficult- very difficult. Over the summer the tremoring increased.

    I was prescribed Klonopin by my now ex-nuerologist. He told me the tremors were nothing to worry about. I was frustrated, but I took the Klonopin anyway. It was miraculous- the tremors stopped. But then all hell broke loose. I had a very, very bad reaction to the Klonopin, which reached its climax when I had a panic attack where I collapsed and vomited, and just laid on the floor for a while, unable to move. Needless to say, I wasnít on the Klonopin very long after that.

    The tremors got worse and worse and worse. My flute playing suffered severely. My hands would go numb occasionally. Iíd lose feeling from about the center of my hands until my fingertips. I could never tell what fingers were moving, and I only knew what keys I was pressing down because I could feel them (under my fingertips). I pointed this out to Mr Flute Teacher, who told me to get to a doctor asap.

    I continued to play through the numbness, but then another sensation occurred: pain. Shooting, sometimes severe, pain. In the beginning it was only when I played (or typed for a long period of time). It got to the point that I dreaded band practice- something Iíd loved- because I knew it was going to be two hours of suffering.

    Most days, now, I am in varying degrees of pain. Sometimes it is unbearable, and it never, ever goes away. I do not remember what it is like to not be in pain. The pain in my hands feels like pins-and-needles, but burning. They are on fire. They feel like they are stuck in steel gloves that are a size too small. It is a squeezing, burning, pricking pain. And the tremor has not gone away. My hands are weak- sometimes too weak to put on my own damn makeup. Iíve had to give up flute, and change my major and change the idea of what I wanted to do for the rest of my life- teach music. Now I cannot, because of this damn mysterious illness.

    My neck hurts a lot, too, and usually that is the cause of these god-awful headaches Iíve been getting. I think theyíre migraines, since Iím sensitive to light and sound, but these particular headaches donít build and build like a tension headache. They come on very suddenly. I feel a certain sensation- like a stabbing or shooting pain- in the back of my skull, and I have about fifteen minutes to take some strong pain med or I will be very, very miserable for the next three hours.

    And my back- my lower back, like towards my hipbones?- it is usually very stiff and sore, and some days I canít walk for the pain. In February, my back muscles actually had a series of deep-set knots that a fellow student was kind enough to massage out, but twenty minutes later, they were back with a vengeance.

    Iíve also lost about thirty pounds, and itís possible that Iíve lost more. I havenít been trying to lose weight, I donít really exercise, and when I have an appetite, I eat like Iím going to the chair. There are weeks when I canít eat a single thing, because if I even look at food I feel like Iím going to throw up. And then there are weeks when I am ravenous, and I cannot eat enough, and I usually overeat because Iíll never know when the ďNot EatingĒ week is going to come around again.

    Some days I canít think straight- hell, I canít even talk straight. Sometimes in the middle of a conversation, I forget a word I want to say. It actually feels like a record skipping in my head and I try to remember the word, but I canít, and Iím still talking, saying ďUh... uhÖ uhÖĒ; Iím a riot at parties. My words also get garbled, and I tend to slur together them like a drunk person. Iíll even talk (or write) out of order: ďStore today, we are going yes?Ē I have trouble articulating- even on paper!- and sometimes I forget what Iím talking about in the middle of a sentence.

    I know Iím forgetting a lot of things, like my insomnia (also diagnosed) and how some weeks are better than others, and the other weeks make me want to stay in bed with my covers over my head. Oh, and now as I speak (er, type) I have this random shooting pain in my arm. Random shooting pain, or burning paints, occur quite a lot, and anywhere in my body. I just tend to ignore them these days.

    I am sick and tired of being sick and tired. My new neurologist, whom I affectionately refer to as Dr. Mad Professor, is very intrigued by my symptoms. He prescribed me Lyrica for the pain (which works mostly, but not completely). Dr. Mad Professor does believe that there is something wrong with me, so he ordered a barrage of tests.

    It is not: bone spurs, nerve damage, carpal tunnel, or some sort of brain-damage thingy. It might be lupus- or multiple sclerosis. But between the two, Iíd take lupus.
    If anyone recognizes these symptoms and has a hunch, please let me know!!

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    to be honest - - i have no idea

    but a few things that might help.

    copy this letter.
    it is a good description of your ailments, and condition.

    modify this letter, to update it.

    keep a diary, explaining how you feel at that particular time.

    all of these will help with your diagnosis.
    it is easy to forget a very important piece of information, when visiting a medical person (whoever is treating you at the time).

    your diary and list of symptoms will help them.

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    Red face

    Also ask the mad professor about parkinsens. I think that he is on the right track to find out things; especially if he's ordering tests ask about an MRI. Even if it turns out to not be lupus, stick around. I also have parkinsens and a couple others have other neuro diseases. You may also want to see a reheumetologist for testing also.
    Don't give up either. Career wise I didn't find my nitch until I was almost 30.

    Read through the threads, you may find some useful info. I also agree with Steve about keeping a journal.

    Hugs
    nonna

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    I am so sorry that you are having such a tough time! I absolutely understand being sick and tired of being sick and tired! It is very possible that you have something autoimmune going on but as Nonna and Steve said, it could be other things as well. I keep a letter much like yours that gives the progression of what is going on with me. I also keep a list of every test that I have had that came back "not normal". Any doctor you go to you need to give a copy of those papers. They don't have the time or inclination to read all of your file but they will read a page you hand them when you walk in.

    Please feel free to read through the threads here and post any questions that you have. Hopefully we can help in some way!
    Mari

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

    ~Winston Churchill~







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    Well where you say your neurologist says you have no nerve problems, my x brain surgeon for neurology i was under would totally disagree, tremors are caused through nerve damage and to many anxiety attacks and the more your heart paces the more anxiety attacks you have the worse your tremors get. I did suffer these problems years back while under him and how they got it to carm down was by an high dose of 40mg of valium daily but over the years as it slowed down, they dropped my valium to 5mg daily but i take that now every couple of days but at the same time don't rule out what (Nonna) said.

    Rrefering the affects of your fingers and the numbness etc get tested for raynauds disease you don't always have to have the redness and sores you may just have primary raynauds but you also need to be tested to see if you have any autoimmune diseases causing this also.

    Best of luck Terri xxx
    Last edited by Peridot20_Gem; 04-05-2011 at 01:45 PM.

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    Than you everyone for responding... it means quite a lot. Next time I see Dr. Mad Professor will hopefully be over Easter (but if not, early May) and it is then that I will find out the results of some bloodwork and my lumbar puncture. I'll bring up what you all said, about seeing a rhuem or perhaps Parkinson's.

    I'll keep everyone posted!
    Much love,
    pisces_music_girl


    Nuerofibromitosis Type One, ca. 1997
    Panic Disorder & Depressive Disorder
    Whatever is currently ailing me hasn't been diagnosed, but I have faith.


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    Hello pisces_music_girl,

    I hope your abit better today, even though alot of us never do feel much different and your welcome to us helping that's what we're here for to stand by one another.
    I do highly suggest you pushing it with your professor as you can't keep going on like this and i do hope your appointments over easter, the quicker the better i always say.
    I suggest you write a list down before you go to fire the questions at him or if not take someone with you and please keep we updated on your results.

    ~Hugs Terri~ xxx

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    Some days I can’t think straight- hell, I can’t even talk straight. Sometimes in the middle of a conversation, I forget a word I want to say. It actually feels like a record skipping in my head and I try to remember the word, but I can’t, and I’m still talking, saying “Uh... uh… uh…”; I’m a riot at parties. My words also get garbled, and I tend to slur together them like a drunk person. I’ll even talk (or write) out of order: “Store today, we are going yes?” I have trouble articulating- even on paper!- and sometimes I forget what I’m talking about in the middle of a sentence.
    I relate to this soooo much. I feel so lucid in my own head and then it is exactly like a record skipping... I get stuck and thats its. This is exactly how my brain/memory issues started. I dont know if you will want to hear this, but mine got worse. Now it happens with doing things as well and it happens constantly throughout the day. You know that record skipping feeling, that block in your way that you cant move past? Mine affects everything now, not just talking. I walk into a room, brain skips, I have to walk back out because i dont know what i am doing and there is no recovering it until I walk back out. I cant comment on what it is or if its a lupus thing, Im going through tremors etc now and am looking at further diagnosis. Whats held me back is not being as tenacious with attaining diagnosis as others have... if I could give any advice it would be to push... push really hard for your diagnosis and results and full tests. And stay on this forum regardless cause these people are awesome

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    Quote Originally Posted by giggle View Post
    I relate to this soooo much. I feel so lucid in my own head and then it is exactly like a record skipping... I get stuck and thats its. This is exactly how my brain/memory issues started. I dont know if you will want to hear this, but mine got worse. Now it happens with doing things as well and it happens constantly throughout the day. You know that record skipping feeling, that block in your way that you cant move past? Mine affects everything now, not just talking. I walk into a room, brain skips, I have to walk back out because i dont know what i am doing and there is no recovering it until I walk back out. I cant comment on what it is or if its a lupus thing, Im going through tremors etc now and am looking at further diagnosis. Whats held me back is not being as tenacious with attaining diagnosis as others have... if I could give any advice it would be to push... push really hard for your diagnosis and results and full tests. And stay on this forum regardless cause these people are awesome
    Hi giggle,

    How you get lucid with your head, we all understand how you are plus the foggness and trying to explain to some rheumo's is terrible but when you have it bad it stops you in your tracks and half the time your doing stuff you don't mean to do when it's totally something else.
    Your don't have to have Lupus in your system to cause this, it only takes one autoimmune disease to trigger it but like i said they love taking the blood till something shows definite and with bloods fluctuating like i stated before it won't help any diagnosis.
    You would'nt be having these symptoms unless your losing your MARBLES completley but when your seeing these specialist you really have to push to get answers, their are some member's with excellent specialist's but i've said it before about mine he ah much good, he's a big believer in bloods being took, last time i went i said to the nurse i don't know about him taking bloods i'll need a blood transfusion at this rate.

    All the best with your diagnosis mate Terri xxx

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    Did you ever find out what the disorder is? This sounds a lot like mine, I get such intense burning in my hands oh it's aweful. And so far no one has been able to diagnose me.

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