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    Old 08-22-2007, 08:10 AM   #1
    Blessed4Life
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    Question Rheumie Thinks Lupus But I Think MS

    I have been dealing with "strange" occurances in my body for about 4 years now. My Rheumie thought Lupus about 3 years ago because my symptoms and family history but then said no after some testing. Because of neurological symptoms, I was seeing a neuro who dismissed everything I said for about a year and half. Because of joint symptoms, I went back the rheumie. He is now thinking Lupus again and warned me that he "has plenty of Lupus meds to treat me." I go back to see him in October.

    Anyway, over the past few weeks my muscle twitching spasming and weakness as well as numbness has been hyped up. There is not a day that I do not have the spasms. They are more frequent and "bigger" (stronger) then ever before. They occur everywhere from my face to my neck to my arms, legs, stomach, chest, behind, feet, ankles, toes, and fingers. I have laid across the bed with my feet hangin over and the muscles in my ankles caused my feet to jerk back and forth. It feels like water is cascading down my legs and there are bubbles as they water passes by my knees.

    I also cannot stop using the wrong words. My children find it so funny but I find it so frustrating. I do it so often than now it is a family joke and I am the butt of it. I know they don't mean any harm so I don't get angry with them but I feel like my brain is slipping. I could go on but you get the picture.

    Here is my dilema. As I mentioned, the neuro thought..."crazy" and dismissed everything. And my rheumie thinks Lupus. I want to get another brain MRI but I don't know if I can take hearing that there is nothing wrong when my body is telling me otherwise.

    Also, has anyone had a sleep study. My rheumie requested it because I have trouble sleeping at times. Since I have twitching and spasms at night, do you think the sleep study picked that up.

    Blessed...despite what happens.

     
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    Old 08-22-2007, 08:22 AM   #2
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    Re: Rheumie Thinks Lupus But I Think MS

    Have a friend who had a sleep study because of apnea. I would think that it would pick up the twitching but I don't know what they're looking for.

    If I were you I'd start by seeing another neuro -- these are fairly broad symptoms you're having. However, I will mention that there have certainly been cases of people originally mis-dxed with Lupus who were later found to have MS. One of these cases was just portrayed in an episode of "Mystery Diagnosis" -- I don't know offhand when it's going to be re-run but if you're interested, let me know and I will come back and post.

    Good luck to you!

     
    Old 08-22-2007, 09:03 AM   #3
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    Re: Rheumie Thinks Lupus But I Think MS

    Bearygood,

    Thanks for responding. I would definitely like to know when the program runs again. I am dealing with a fatigue episode right now since yesterday. I pushed myself through my day yesterday but today I can't seem to get started. Everytime I get up, I find myself back in my bed. My computer is within arms left of the bed so I get up to it every so often to check my work email. I am so very frustrated. I feel so alone. It is like how do you get someone to understand what you are experiencing when they cannot see it. One night my husband said he was awakened by my "vibrating". So he knows that something is wrong but with symptoms coming and going and good days and bad days, I am sure he is questioning just how serious this could be. I want to see another neuro but everytime I ask my primary doc for referral, I end up back at the same neuro's office. My prayer is that the sleep study shows something so that it is no longer a "take my word for it" experience when I see another neuro. I'll ask for another referral.

    Michelle

     
    Old 08-22-2007, 09:51 AM   #4
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    Re: Rheumie Thinks Lupus But I Think MS

    Michelle, I have personally never "vibrated" but there are sure a lot of people with MS who have.

    Just looked -- the next airing will be on Discovery Health on 8/26 at 6:00 PM. It may be repeated on TLC and another channel but this date/time I know for sure. If you want to research the episode, the segment is described as "After Quettia Davis steps on a crochet hook strange things begin to happen to her body".

    Hope this helps!

     
    Old 08-22-2007, 02:07 PM   #5
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    Re: Rheumie Thinks Lupus But I Think MS

    Bearygood,

    Thank you. I will put it on my calendar so I don't forget. My memory is the worst. From forgetting names to forgetting events. My husband and I got into huge argument because I told him he didn't do anything special for my birthday (June). How could I forget that we spent the entire day in NY City and we saw The Lion King on Broadway. Now that is a bad memory.

    Thanks again,
    Michelle

     
    Old 08-23-2007, 03:33 PM   #6
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    Re: Rheumie Thinks Lupus But I Think MS

    Hi Michelle-

    I love your attitude- Blessed 4 Life- no matter what happens. I feel EXACTLY the same way! And I thank God that after a year of neurological issues, I finally know what I have. My many docs thought I had MS or it was just in my head. Finally, through God's help, I think, I found the symptom list for Lyme and there it was! I found a Lyme Literate Doc (LLMD) on the Lyme board on this site and now am being treated.

    Don't let a negative Lyme test rule it out- It is common to have a false negative. Now that I do research on the disease, I cannot believe there is so much false info out in the medical community. I would never trust ANY doc who is not a designated LLMD to rule out or in Lyme. And I did not check where you live but Lyme has been reported in 48 or 49 states, I forget which.

    Here is a list of Lyme symptoms. I am posting this because you mention a few. If you see similarities on the symptom list and would like to investigate, please go over to the Lyme board. There is a lot of help and info there.

    Good luck!

    Unexplained fevers, sweats, chills, or flushing
    Unexplained weight change--loss or gain
    Fatigue, tiredness, poor stamina
    Unexplained hair loss
    Swollen glands
    Sore throat
    Testicular pain/pelvic pain
    Unexplained menstrual irregularity
    Unexplained milk production: breast pain
    Irritable bladder or bladder dysfunction
    Sexual dysfunction or loss of libido
    Upset stomach
    Change in bowel function-constipation, diarrhea
    Chest pain or rib soreness
    Shortness of breath, cough
    Heart palpitations, pulse skips, heart block
    Any history of a heart murmur or valve prolapse?
    Joint pain or swelling
    Stiffness of the joints, neck, or back
    Muscle pain or cramps
    Twitching of the face or other muscles
    Headache
    Neck creeks and cracks, neck stiffness, neck pain
    Tingling, numbness, burning or stabbing sensations, shooting pains
    Facial paralysis (Bell's Palsy)
    Eyes/Vision: double, blurry, increased floaters, light sensitivity
    Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
    lncreased motion sickness, vertigo, poor balance
    Lightheadedness, wooziness
    Tremor
    Confusion, difficulty in thinking
    Difficulty with concentration, reading
    Forgetfulness, poor short term memory
    Disorientation: getting lost, going to wrong places
    Difficulty with speech or writing
    Mood swings, irritability, depression
    Disturbed sleep-too much, too little, early awakening
    Exaggerated symptoms or worse hangover from alcohol

     
    Old 08-23-2007, 07:16 PM   #7
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    Re: Rheumie Thinks Lupus But I Think MS

    Wow! That is some list! After reading through it closely, I don't think it fits but I sure have some of those. I am truly trusting that God will reveal in His time (not mine) what is going on with me. Strange thing about this body of mine, yesterday, I could barely stay of out bed long enough to iron my clothes and today I feel pretty normal. I'm not running marrathons or anything but I'm not dragging my body through life either. Praise the Lord for you! I know how much of a blessing it must have been for you to finally know what was causing your symptoms. Are you feeling better?

    Michelle

     
    Old 08-23-2007, 07:56 PM   #8
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    Re: Rheumie Thinks Lupus But I Think MS

    Michelle,
    Lyme and MS have so many symptoms which ARE similar, and quite a few which are different, but thats why it is SO important to rule out LYME before getting a MS dx....
    Most of us have at least a few of the symtoms which are on the Lyme list...but there are just as many symptoms which us MSers have, which LYme doesnt cause..
    Its interesting to read about LYme, and Zandvoort is an activist at keeping all of us informed of the symptoms (thanks Zandvoort) but Lupus, your original dx, cant be ruled out either...your symtpoms do sound alot like Lupus and its closer, in disease terms, then Lyme is...
    Hope you get some answers.
    Nikki
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    RRMS- dx 05

     
    Old 08-24-2007, 02:30 AM   #9
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    Re: Rheumie Thinks Lupus But I Think MS

    Michelle, like you I experience a feeling like cold water is dripping on my legs, and feet. I also have the spiders crawling on my legs, and feet. I just followed a link to something called Arachnoiditis, which I am interested in discussing with my Neurologist, because I have had numerous surgeries around my spine, and other compelling reasons to suspect Arachnoiditis while I am seeking that elusive definitive dx. Arachnoiditis was the first profile I have seen that made the reference to water on your extremities.

     
    Old 08-24-2007, 05:44 AM   #10
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    Re: Rheumie Thinks Lupus But I Think MS

    Hi Blessed-
    nope, not feeling better yet. But it will come. When you go on meds that kill the bacteria, the bacteria gives off toxins that make you feel worse. It could take a year before I am feeling a lot better. The longer you've had it, the longer it takes. There is always a chance of relapse afterwards. The meds I started I had a reaction to so I have to start new ones after Labor day.

    Best of luck in finding whatever it is! I know the challenge of wondering....should I just put it in God's hands or should I be advocating for myself? I've been through the cycle. I'll put it in God's hands for a couple of months and then something or someone will catch my interest in a dx direction to pursue. That is how it was with me when I finally was diagnosed. Events came together to get me to the doc I needed to get to when I had just decided to take it easy and see if a Psychotherapist could help- accept that it was all in my head like the docs said. I think we need those little rests in between.

    you are in my prayers!

     
    Old 08-24-2007, 08:46 PM   #11
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    Re: Rheumie Thinks Lupus But I Think MS

    Spasms are the worst. I spent years doing mhat my partner refers to as cow-kicking annd was finally given 400mg ofneuontin, which for me was a wonder drug. Spasms stopped compltely and I could finally sleep thru he night. roblem turned out to be comprssed spinal nerves, now surgicall fixed, but there's some MS involved too, theneuro said. So I have a stash of valium and tak 5-10 ms, when I've had a had day.

    taosdaphne

     
    Old 08-25-2007, 08:55 AM   #12
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    Re: Rheumie Thinks Lupus But I Think MS

    Perhaps my problem is that the neuro I saw only did one MRI and it was only my brain. When that was "ok" she just blew off all of my symptoms and basically said come back when you have visible symptoms. I left her office in tears. I am going to ask my primary doc to refer me to someone else.

    Michelle

     
    Old 08-25-2007, 02:23 PM   #13
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    Re: Rheumie Thinks Lupus But I Think MS

    That is so aweful, Blessed. I do not blame you. It is so horrible when people you go to for help blow you off. Here you go, all vulnerableand everything and they kick you when yu are down. I don't know, maybe doctors see so many hypochondriacs that itmakes sense to them. But form my perspective, I just don't get it. Used to be when people decided to be doctors, they did it becuase they cared for people. You don't really see that any more.

     
    Old 08-25-2007, 08:48 PM   #14
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    Re: Rheumie Thinks Lupus But I Think MS

    Michelle,
    The sleep study will pick up on your twitching, jerking or other movements. Remember when they hooked up all those wires and some of them were connected to your legs? They can monitor your movements and pick up Restless Leg Syndrome and other sleep disorders as well as sleep apnea.

    I have obstructive sleep apnea and stop breathing many times every hour and have to wear a dental appliance to keep my airway open at night. I have read that there are a high percentage of MS patients with sleep apnea. Keep in mind though, even if they find you have some sort of sleep disorder, it doesn't mean there aren't other problems too. Make sure you get that corrected, but if you don't feel better after using an appliance or CPAP, keep pushing for answers until you get a clear diagnosis and on the right track.

    Annie

     
    Old 08-26-2007, 06:47 AM   #15
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    Re: Rheumie Thinks Lupus But I Think MS

    Thanks Annie.

    I think I will call my primary doctor this week to go over the results. Although my rheumie actually wanted the study, my primary ordered it. I am assuming that the primary will get the results.

    Michelle

     
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