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  • I tested positive for an autoimmune disorder

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    Old 08-17-2004, 10:44 AM   #1
    coryb
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    I tested positive for an autoimmune disorder

    As I said in my previous thread, I've been waiting to hear from my doctor about some blood tests I had. Well, my Dad talked to the doctor while I was still asleep. He told me the doctor said that I did test positive for an autoimmune disorder. I'm not exactly sure what kind. When I saw my regular physician and had basic blood tests done, he said that the results indicated I might have Rheumatoid Arthritis. I don't know if that is still what they think it is, but my Dad told me the doctor said it could be causing my dizziness and hearing problems. I am still very worried of the possibility that irreparable damage has already been done and the fact that I only have this one ear anyways will hinder my recovery. For three weeks now I have been having problems with my hearing. Normal voice sounds become distorted or muffled. I hope this isn't a permanent problem. I will for sure keep you guys updated on my progress. Thanks for all the support!

     
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    Old 08-17-2004, 11:09 AM   #2
    Wowwwweeee
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    Cool Re: I tested positive for an autoimmune disorder

    Hey Coryb,

    I was exposed to a viral infection called Parvo Virus. It is also in the autoimmune family. This happened a few years prior to my wooziness condition, and a result of me working in a rehab facility.

    I too had to see a rheumatologist. Among other things, they first thought I had RA as well. I tested positive for (if I remember) 3 out of 5 symptoms for RA.

    Parvo Virus remained in my system for a few years after initial exposure. Most people get this virus at one time, but for some people, when they get it, it can make them very sick. I was very, very ill for about 8 months.

    Before I post any more on my experience with Parvo Virus, I'd be interested to hear what autoimmune virus you were exposed to.

    Maybe you don't need to worry too much yet - if they said you were "exposed" to an autoimmune illness, then the exposure has passed. It's normal for some viruses to remain in the blood AFTER the effects of the virus has worn off. I carried an abnormal sed rate on my blood tests for years after my exposure to Parvo. I had to go for weekly, then monthly, then every three months, etc, blood tests just to see how the illness was leaving my system. It's also like Herpes. If you test everyone by blood for Herpes, the majority of the population will have had exposure to it. But it doesn't mean that you actually have it or are affected by it.

    When I was first so sick from Parvo, they kept changing the diagnosis of what they "thought" I had. I heard it could be AIDS or Lupus, and or Leukemia. At one point I told them that they needed to stop telling me what it "could" be because it was too much for me, and they needed to let me know what I had.

    Another gal in the office had the same reaction to this exposure - and it turned out that there was one doctor in the hospital where we live that knew about Parvo Virus , so he tested her for it. When she finally had a diagnosis, and told me, *I* was the one who told my doctor to test ME for it. Mystery solved.

    Just keep us posted. Big Hug. xo

    Last edited by Wowwwweeee; 08-17-2004 at 11:11 AM.

     
    Old 08-18-2004, 06:07 AM   #3
    Billy1234
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    Re: I tested positive for an autoimmune disorder

    Just to clear things up a little - an autoimmune condition isn't a virus. An autoimmune disease is where the bodies own immue system attacks itself, RA is a very common autoimmune disease, so is psorias.

    Autoimmune diesease are caused through a number of factors, they are thought to have some kind of genetic factor/predisposition, though it is not unheard of for a virus to be the factor that starts it off.

    An autoimmune disease is in noway related to AIDS (Aquired Immune Dysfunction Syndrome), which is totally the opposite (ie in AIDS the immune system becomes less effective and shuts down, in an Autoimmune disease the immune system becomes over active and starts attacking the bodies structures).

    I presumme the blood test they did was to test for the rheumatoid factor, which is high in RA and many other autoimmune diseases. Other illnesses can raise the rheumatiod factor such as viral infections, but these are not considered autoimmune diseases.

    There is a condition called AEID (Autoimmune inner ear disease) which can effect hearing and balance, which is sometimes linked to cogans syndrome (autoimmune disease of the stomach, eyes and ears - thouhg eyes are usually the first and biggest problem), but it can be linked to a whole host of other things, or be a condition all on it's own.

    The treament for autoimmune problems is nearly always a course of corticalsteriods (presdone) to slow down the overactive immune response, often once the immune system has settled down treatment can stop. The acute effects of hearing and balance are usually temporary, but it sometimes leaves a more chronic deficit (usually minor and only at certain ranges).

    HOpe this helps some

     
    Old 08-18-2004, 08:59 PM   #4
    coryb
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    Re: I tested positive for an autoimmune disorder

    Well, I went to my neurot. today for a scheduled appointment, but not before I was tortured last night trying to sleep. It didn't feel 100% like dizziness or vertigo. Just like a strange pressure feeling in the back of my head/neck. I get this sometimes. Hard to describe; just feels... yucky, for lack of a better term. Kept me up for two-and-a-half agonizing hours. It was like I was in a nightmarish trance the whole time.

    Well, we had the rheumotologist send the results of my tests to the neurot. He said I did have some sort of autoimmune disease, but they don't know exactly what. But he didn't act like it was dormant; he seemed more to think it was active, but he couldn't really do much about it. He did say that *he* did not have much more to do for me. I had another ENG which showed a strong left ear (and 92% weakness in the right). But he said that my VOR was "still" bad. This is kind of confusing because I know he told me that my VOR was fine before, but I did remember this at the time. And I don't see why my VOR would still be bad from my surgery since that was back in December of 2001. And since then, my dizziness has seemed to have gotten worse (after my initial recovery). I insisted on an audiology exam because I have been having sound sensitivity and distortion, but the test showed only minimal drops and gains across the spectrum.

    He said I DO NOT HAVE Autoimmune inner ear disease because I have no signs. He did say that Sjogrens (sp?) disease was a possibility, but I looked that up and it didn't mention dizziness as a symptom. He is sending me to a nearby doctor to test for this. So I guess now I am going to try to figure out what autoimmune disease I have. Hopefully that won't turn into a dead end also.

    Thanks Billy and W. for your replies!!

    Cory

     
    Old 08-19-2004, 04:18 AM   #5
    Billy1234
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    Re: I tested positive for an autoimmune disorder

    Cory,

    I see from your history you've a labyrinthectomy, which obviously needs to compensated for (which could take months or years even with VRT), and even though you've compensated some any secondary problem (even a common cold) can cause your to decompensate... So perhaps the autoimmune problem is unrelated, except for the fact that it's causing you to fail to compensate.

    That said, IF you have fluctuating/degrading hearing and balance symptoms (especially if your severe spontanous attacks as oppose to just motion/visually provoke symptoms), and a documented autoimmune problem then AIED has to be considered. The rheaumatologist will no much more about treating autoimmune problems than the neurotologist - you may also want to consider find another neurotologist.

     
    Old 08-22-2004, 01:33 AM   #6
    coryb
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    Re: I tested positive for an autoimmune disorder

    Quote:
    Originally Posted by Billy1234
    That said, IF you have fluctuating/degrading hearing and balance symptoms (especially if your severe spontanous attacks as oppose to just motion/visually provoke symptoms), and a documented autoimmune problem then AIED has to be considered. The rheaumatologist will no much more about treating autoimmune problems than the neurotologist - you may also want to consider find another neurotologist.
    My doctor said I do NOT have Autoimmune Inner Ear disease because I do not show the signs. While I perceive a problem with my hearing in the distortion of sounds, the audiology exams shows no significant changes. The neurot. said something about recruitment. In my only good ear, I have a significant high frequency hearing loss, and I think he said that might be causing the sound sensitivity and distortions (because of recruitment). I am going to go see another rheumatologist recommended by the neurot. The first one seemed rather.... odd, and didn't even really know where to go after the blood results got back (?!). I have already been to 5 different neurotologists/neurologists over the last couple of years. I think I've just about exhausted all the ones in this area.

    I am just frustrated out of my mind because I think this current neurot. doesn't realize how bad my dizziness/vertigo is. I am an extreme introvert and have trouble making a big scene over how bad it is. If I were somebody else, I feel like I would be screaming at the top of my lungs everyday!! And I just can't give a simple description either. My dad feels the same way as the doctor. He tells me that he knows I am really sensitive about anything that goes wrong with me and that I worry too much about everything. He thinks I am worried about performance on a job because I can't be 100%. It's not about being less than 100%. It's about being 0% on the job because there are days that I am just so out of whack that can't do a thing! Both of them want me to get better, but they think that I'll still do fine even if I don't.

    Some days I think that it would have been a lot different if my grades in school (major in Computer Science) would have suffered as this got worse because then they would see how much it affects me. But I was too stubborn to let that happen

     
    Old 08-23-2004, 07:59 AM   #7
    Billy1234
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    Re: I tested positive for an autoimmune disorder

    AFAIK AEID does not have to display hearing loss. In the classic textbook case hearing and balance are effected - but your not in a textbook!! If only the balance organ was effected by the autoimmune problem then hearing would be normal - a normal hearing test doesn't rule it out. That said, if your hearings normal, and you don't have any acute spontaneous attacks of vertigo (severe disabling vertigo leaving you unable to stand for several hours), then AEID does become unlikely.

    It could be your neuroto is correct, and you do have a stable deficit and have failed to compensate, in which case VRT usually helps, but recovery can take a long time (months-years). If you also have an unrelated autoimmune problem then this could slow down or stop compensation (as can any physical or immotional stress), so it's def worth getting the autoimmune thing treated as it might help all round....

    I totally know where your comming from, people think if you look ok, you must be ok. They really cannot appreciate what it feels like.

     
    Old 09-25-2004, 10:43 PM   #8
    coryb
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    Re: I tested positive for an autoimmune disorder

    The past week I've had a problem that seems to be more indication of an autoimmune problem. Last Sunday I started having pain on the top of my left eye and behind the skull bone. It wasn't the kind of pain like irritation or burning, but more like the feeling that something was swelling. I knew that migraine headaches were sometimes felt in the back of the eye because I had this about 4 or 5 years ago, but I thought this was different because it was more on the upper part of my eye. And also, the pain increased when I moved my eyes. I saw my physician and he looked at the eye with a flashlight. He said that there was an inflamed lubricant gland and gave me antibiotic eye drops. I used that for a couple of days and it didn't seem to help, and I also started to develop a head/neck ache. So I got in to have my optometrist look at the eye on Friday. I told him about my autoimmune diagnosis, which caught his attention. He looked in my eye and then told me that something in the outer portion of my eye, starting in the front and going around to the back, was inflamed. He said that it certainly could be caused by an autoimmune or rheumatoid problem and that getting a diagnosis of what specifically I had was key. He gave me steroid drops that I have been taking. It seems to have helped so far, but the problem has still lingered a bit.

    I am concerned that whatever it is I have is now (supposedly) affecting my eyes. That is the last thing that I would want to be affected. I am just praying that they can find out what it is and get me effective treatment for it.

     
    Old 09-27-2004, 05:15 PM   #9
    BennyGibb
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    Re: I tested positive for an autoimmune disorder

    It may worth checking out cogans syndrome (it probably isn't that BTW - as thats usually pretty severe very quickly, but it may lead you somewhere else)...

    The eye inflamation could just be an inflammed eye...

     
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