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  • Mystery illness, docs have no answers :( Any suggestions?

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    Old 10-08-2014, 03:41 PM   #1
    JakeMajor
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    Mystery illness, docs have no answers :( Any suggestions?

    Here are my symptoms:

    -

    Symptoms:
    -Balance/gait issues (cerebellar ataxia?)
    - full body ‘vibrations’ when lying down
    -waves of dizziness
    -slight motor problems
    -internal/resting tremor
    -head pressure/cotton ball feeling
    -really bad anxiety
    -chest tightness
    -tinnitus
    -vertigo
    -involuntarily raising left arm
    -brutal headache in temple/back of head when bending over, jumping or changing positions
    -chest trembles at times when breathing
    -mood swings
    -periods of confusion/brain fog
    -‘visual snow’ or static when I look at bright objects in FoV
    -dark spots in corners of eyes when looking up or left/right
    -right eye is lazy
    -burning sensation in feet
    -restless leg
    -facial numbness
    -arm/leg weakness
    -light sensitivity
    -muscle twitching

    Tests performed:
    -CT scan of brain (normal) - non contrast
    -CT scan of spine – normal non contrast
    -MRI of brain (sinus polyps/cysts) - non contrast
    -EKG (normal)
    -Chest X-ray (normal)
    -Contrast CT of abdomen w/ barium swallow – unremarkable except for cyst on right kidney 6mm, two 2mm unidentified lesions on left kidney
    -3 abd. ultrasounds (normal, save the third one, which reported a 'slight' coarseness on liver - was declared a 'subtle finding')
    -5 rounds of bloodwork (high bilirubin once, ferritin usually higher end of normal, IgA was high twice – tested twice negative for Lyme – ANA neg, hepatitis neg)
    -2 fibroscans ( 4.9 and 4.1 respectively - little to no fibrosis - normal)

    Possible assumptions:
    - Hepatitis?
    - Lupus or similar autoimmune condition has been suggested
    - Gluten ataxia?
    - Some form of vascular deficiency
    - ALS?
    - Multiple Sclerosis?
    - Vasovagal reaction?
    -metabolic encephalopathy? (hepatic,uremic,viral, etc)
    -guillian barre?
    -myasthenia gravis?


    Docs are stumped and I am flat out disabled.

     
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    Old 10-08-2014, 06:04 PM   #2
    sweetpotato13
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    Re: Mystery illness, docs have no answers :( Any suggestions?

    Jake, here's my advice to you. Get yourself a psychiatric exam too. As someone who also suffers from anxiety, so many of your symptoms MAY be anxiety-related. I don't doubt for a moment that you have all of these symptoms and are feeling terrible. I can appreciate all of the time and trouble you've already expended by having these tests.
    It's difficult to WANT to have something wrong just so you can fix it, and feel better!
    You've well investigated the physical. Now I think it's time to investigate elsewhere.
    What do you think?

     
    Old 10-08-2014, 07:47 PM   #3
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    Re: Mystery illness, docs have no answers :( Any suggestions?

    My son is just like this. He has had seven years of it and is now in a wheelchair. They STILL don't know what it is. It has slowly progressed, but there are no signs seen on any scan or examination. His neurologist thought it was a para neoplastic syndrome, but he still hasn't got any cancer. I hope you have a better result, and if you do please let us know. Sera

     
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    Old 10-09-2014, 03:05 PM   #4
    JakeMajor
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    Re: Mystery illness, docs have no answers :( Any suggestions?

    Quote:
    Originally Posted by sweetpotato13 View Post
    Jake, here's my advice to you. Get yourself a psychiatric exam too. As someone who also suffers from anxiety, so many of your symptoms MAY be anxiety-related. I don't doubt for a moment that you have all of these symptoms and are feeling terrible. I can appreciate all of the time and trouble you've already expended by having these tests.
    It's difficult to WANT to have something wrong just so you can fix it, and feel better!
    You've well investigated the physical. Now I think it's time to investigate elsewhere.
    What do you think?
    I think anxiety is a cop out diagnosis for doctors who don't want to do their job. I've been to therapists, tried all sorts of meds, done cognitive behavioral therapy, all of it. Nothing worked. So 'in my head' is off the table!

     
    Old 10-11-2014, 09:19 AM   #5
    sweetpotato13
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    Re: Mystery illness, docs have no answers :( Any suggestions?

    Good to hear. I think that it's a cop out too but you didn't mention anything about it, so it seemed a reasonable suggestion. I sure hope that you get the diagnosis you so desperately need!!

     
    Old 10-11-2014, 10:04 PM   #6
    Anna645
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    Post Re: Mystery illness, docs have no answers :( Any suggestions?

    I am going through the same issue. I am unable to walk most days because of nerve pain, joint swelling, and burning hives. I can't get a diagnosis.
    I need help!
    I started to ask people I know with auto immune diseases for doctor referrals, and I am looking into going to local support groups to help me find some answers.
    I am sorry for your pain and frustrations.

     
    Old 10-24-2014, 11:57 AM   #7
    Brad521
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    Re: Mystery illness, docs have no answers :( Any suggestions?

    To those interested, it was Wilson's Disease.

     
    Old 02-16-2015, 09:07 AM   #8
    yayagirl
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    Re: Mystery illness, docs have no answers :( Any suggestions?

    Hi Brad

    Just so you know, of course you may have Wilson's but Wilson's causes excess copper.

    The higher than normal iron is not from Wilson's, and it is dangerous to ignore. Please do read up about excess iron. Usually you can give blood several times a year to help control it.

    Please let me know what you find out about the excess iron. Excess iron damages the heart, your blood circulation and the liver, among other things. Untreated it causes bronzing of the leg and foot skin and can cause severe pain in the feet and legs. Please don't ignore the excess iron level...it is a serious matter.

    For that matter, others that have replied should also be checked for excess heavy metals. They wreak havoc on the body, cause pain and it can get worse.
    __________________
    ~ YaYa ~

    Last edited by yayagirl; 02-16-2015 at 10:31 AM.

     
    Old 02-22-2015, 11:27 AM   #9
    sueofbrookfield
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    Re: Mystery illness, docs have no answers :( Any suggestions?

    Get copied (typed reports) of your tests. Make sure it does not mention Chiari I Malformation. Most doctors will not mention it since they know little about it and believe it is a childhood condition. I have had many of your symptoms and my doctor mentioned in passing my MRI showed this but it was not the cause. She was 100% wrong. It was.

     
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