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  • Severe fatigue and vision disorder. Immune problem ??

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    Old 09-06-2004, 09:29 AM   #1
    Jorgen L
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    Question Severe fatigue and vision disorder. Immune problem ??

    I am a 18 y old man with a health problem I just can’t handle. I had to terminate education (high school) this year. So far, no one has been able to help me, so I would really appreciate any hint that could lead me to the right track. There are several hypothesis, but none of them seem to be right.

    Short description of history and symptoms :
    I can remember some of the symptoms (concentration problems) back in 2000, but it was not really a problem at that time. My health turned worse in 2003, and 2004 has been a nightmare. I have never used any kind of narcotics, and I am not depressed.

    I am struggling with severe fatigue - the entire body. It is difficult to participate in a conversation, and it is almost impossible to concentrate on lessons etc at school. I can no longer use a PC – symptoms turn worse almost immediately


    I have bad balance, and my movements have become clumsy.
    I have monocular diplopia (double vision)
    I have bad short-time memory
    I feel better in the morning than in the evening
    If I get even a light cold e.a., all my symptoms get severely worse


    I experience a very positive effect of ’adrenaline-triggering’ situations - being scared, angry, intensive physical exercise and so on...


    What has been done :
    I have done a cerebral MRI twice. No indications.
    Analyses of spinal fluid show no indications.
    The endocrinologist have no answers.
    Both cortisole and thyroxine seem to be ruled out . Dopamine level in urine is a little bit higher than expected, but so far we don’t see any connection.
    I have been tested for Myastenia Gravis. No indications.
    I am taking B12 injections – so far no effect.

    Could these problems be caused by an immune disorder ??
    If anyone have any idea what’s wrong with me (or know anybody who does, please let me know.


    Best regards
    Jorgen L

    Last edited by Jorgen L; 09-07-2004 at 12:57 PM.

     
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    Old 09-06-2004, 12:36 PM   #2
    PatNJ
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    Re: Severe fatigue and vision disorder. Immune problem ??

    Hi, Jorgen,

    I'm so sorry that you've had such a rough time lately. I have an almost-20-year-old daughter and a 15-year-old son, and I know that this is not how you want to -- or should be -- spending this stage of your life.

    I applaud you for not giving up and for continuing to search for answers; it would be all too easy for someone of your age in your situation to give up and find comfort in drugs or alcohol, or engage in other risky behaviors. Right now, a positive outlook is your best ally!

    I really think that you are dealing with an autoimmune disorder, possibly neurological or neuromuscular in nature, although I also think that further thyroid testing is in order. It's not at all uncommon to have overlapping autoimmune disorders. You mentioned having had your thyroxine (T4) level checked, but have you had any anti-thyroid antibody testing done? What about a TSH test?

    Back to the neurological or neuromuscular theories...

    Your symptoms are almost textbook myasthenia gravis (I suffer from MG). I know that you said that MG had been ruled out, but would you please tell me what tests were performed to reach that conclusion? Following are the usual diagnostic tests for MG:

    1. Acetylcholine (AChR) receptor antibodies

    2. Anti-MuSK antibodies (Unfortunately, many doctors, even neuros, are not familiar with this test; this test is often positive if the AChR test is negative.)

    3. Tensilon test (can be unreliable and is often not administered, in favor of the tests in #4, below)

    4. EMG, nerve-conduction studies, repetetive-stimulus EMG
    (The latter is best administered by a neurologist who is a neuromuscular specialist, preferably one who has a subspecialty in neurophysiology.)

    5. Single-fiber EMG (This is usually the MG test of "last resort"; it is generally performed at a large medical center, usually at a major teaching hospital, because it requires special expertise and experience on the part of the neurologist/neurophysiologist performing the test.)

    Every test I had (I didn't have the Tensilon test) was negative, except for the single-fiber EMG.

    Please, please, please talk to your doctors about pursuing this diagnosis. MG is pretty rare, and even many neuros are not that familiar with its symptoms and especially with all of the diagnostic tests. A neurologist who is a neuromuscular specialist is the ideal doctor to consult about a possible MG diagnosis.

    I should note that there are other neuromuscular diseases that could be behind your symptoms. The tests in #4 can be useful in diagnosing some of them, as well.

    Jorgen, I know that running from specialist to specialist and undergoing test after test is no fun, but I also know how frustrating it is not to know what is wrong with you.

    I hope that I have been of some help to you. Please keep in touch. I will be thinking of you. Hang in there!!

    Best,
    Pat

     
    Old 09-23-2004, 06:54 PM   #3
    californiasunflower
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    Re: Severe fatigue and vision disorder. Immune problem ??

    Quote:
    Originally Posted by Jorgen L
    I am a 18 y old man with a health problem I just can’t handle. I had to terminate education (high school) this year. So far, no one has been able to help me, so I would really appreciate any hint that could lead me to the right track. There are several hypothesis, but none of them seem to be right.

    Could these problems be caused by an immune disorder ??
    If anyone have any idea what’s wrong with me (or know anybody who does, please let me know.


    Best regards
    Jorgen L
    Hi Jorgen,

    The answer to your question is yes. Based on your symptoms and the tests you listed, it appears that the physicians were trying to rule out MS. My first thoughts. There is also a rare disorder called Susac's Syndrome. Oftentimes it is misdiagnosed as "complicated migraine" or MS. There is a post on the MS board and the rare disorder boards specifically about Susac's. The key to diagnosing it is a Branch Retinal Artery Occlusion (BRAO). You say you have double vision--sometimes the patient with Susac's is aware or not of an eye problem. Have you seen an ophthalmologist and/or neuro-ophthalmologist for the double vision? They are pretty good at helping diagnose why the eye disorder and possibly find a cause.

    Eye problems are usually the organ an autoimmune and/or systemic condition presents itself in. Causes of eye problems are diabetes, MS, Lupus (vasculitis), Sarcoidosis, Wegener's Gran. (vasculitis), Stroke, tumor, Susac's, Antiphospholipid Syndrome (sticky blood), hypercoagulabilities, hypertension, arteriosclerosis (heart problems). Double vision can also be a cause of eye muscles going awry--like the Myasthenia Gravis.

    so I hope the above gives you some info to ponder and research. Good luck to you. Hope you find the cause and get well.

     
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