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  • 6 1/2 years sick and still no idea what it is, please help!

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    Old 09-03-2020, 03:33 PM   #1
    HelgeMattig
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    6 1/2 years sick and still no idea what it is, please help!

    It all started about 6 1/2 years ago.
    From one day to another my left ear felt swollen, about 1-2 weeks later my right ear too.
    I consulted an ENT physician who made some tests and found NOTHING.

    Some weeks later i had my 19. birthday and had a party with my friends. Since then i also have a "noise" in my ears.
    Well again consulted another ENT physician. Again he found nothing.
    He made an MRT and said i have a cyst in my right maxillary sinus (and matching sinusitis).
    He thought it might causes the problems, but he is not sure about that.
    I ended up getting it removed by surgery but it did not fixed anything.

    After time the symptoms got worse and worse and i also developed temporomandibular joint tension which means it got also harder
    and harder for me to open my mouth.
    Of course i visited my dentist. he made a 2D and 3D panorama picture. he could not find anything but suggested me to visit a specialist
    for an "occlusal splint". I ended up visiting 3 different doctors and getting 3 (different) of those splines over the years. It either did not helped
    at all or made things even worse. I actually dont think this is my problem.

    My latest dentist was an "alternative doctor". He believes in NICO (silent inflammation of the jawbone) and after a few tests said i have that
    and ended up getting a surgery. Now it felt even worse. After 2 months he "revised" that with a second surgery, now its 1 month later
    and it is even worse than it was after the first surgery. Luckily he only did one out of 4 locations he diagnosed those silent inflamations, yet.
    But still if it does not get any better i have to see another doctor just to get this fixed, which most likely wont fix my real problem.
    Yes it was a stupid idea to visit an "alternative doctor" but trust me after 6 1/2 years and lots of pain you might would do to...

    My problem is i reached the point where i do not know what to do.
    I've seen lots of doctors over the years (including lots of tests) and tried a lot of stuff and nothing worked or made it even worse.
    Its also getting worse over time without doing anything.

    I always describe my symptoms with those of an influenza (without fiber and only in the head) or a massive hangover maybe.
    My whole head feels swollen/inflamed and of course the temporomandibular joint tension/tensions at all. (Which was the last symptom to occur, years later)

    I feel like nobody of those doctors cares, nobody wants to dig deeper into this and find the cause.
    They just want to sell their stuff or do nothing at all. Like "Why dig deeper into this if we can make more money if we keep him sick doing nothing."

    So because i do not really know what to do (except getting my jawbone fixed by a real doctor if it's not getting better) i figured
    i might give it a shot and try asking over here.

    Maybe someone has an idea what it could be and advice on what to do?
    I dont live in the states so maybe (hopefully) you people know better.

    Edit:
    I want to add that alcohol (and other things that increase bloodflow) for example or heat, rain or weather changes for example all make it worse.
    well classic for an inflamation i guess.

    Last edited by HelgeMattig; 09-03-2020 at 03:45 PM.

     
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    Old 09-04-2020, 10:01 AM   #2
    quincy
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    Re: 6 1/2 years sick and still no idea what it is, please help!

    You've been through a hellish experience. Do you have copies of all the diagnostics reports?

    Have you had a CT and an MRI of your head?

    Was it the alternative doc whomdid the surgeries....and what did you have done exactly?


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    Old 09-04-2020, 06:45 PM   #3
    HelgeMattig
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    Re: 6 1/2 years sick and still no idea what it is, please help!

    Quote:
    Do you have copies of all the diagnostics reports?
    Yes, or at least most.

    Quote:
    Have you had a CT and an MRI of your head?
    Not at the same time but over the years both.
    The pictures match my symptoms of inflammation/swollen feel (sinusitis) but they do not show the cause (at least according to my doctors.)

    I also have an OPG and DVT. (Made by my dentist)

    Quote:
    Was it the alternative doc whomdid the surgeries....and what did you have done exactly?
    He only did the NICO surgery.

    NICO is highly debated.
    Basically the people who believe in it say its a silent inflamation of the jawbone which can cause a wide range of problems.
    The solution is getting it removed by surgery. (what i did)
    The catch is they also say it cant be seen (or almost not) on radiation pictures.

    Apart from that i had the cyst in my right maxillary sinus removed by a "real" doctor.

    Non surgery was the 3 splines over the years.

    Also lots of blood and other tests for lots of stuff.
    Including Allergies, intolerances, borreliosis, complete blood count, glandular fever, hepatitis... to much to list. Many of those multiple times.

    Tried out vitamins and minerals which also did not helped at all.
    That said my blood values are pretty good. According to them im a pretty healthy man. Which unfortunately isnt the case.

    Last edited by HelgeMattig; 09-04-2020 at 07:15 PM.

     
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    Old 09-05-2020, 08:48 AM   #4
    quincy
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    Re: 6 1/2 years sick and still no idea what it is, please help!

    Wow...it's understandable to see as many docs as possible. Seems you've had all pertinent tests. Normal and healthy are so overrated...sigh.

    Do you get relief from any medications? Have you tried accupuncture?

    Curious if you've been checked by a rheumatologist?

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    Old 09-07-2020, 02:31 PM   #5
    HelgeMattig
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    Re: 6 1/2 years sick and still no idea what it is, please help!

    Quote:
    Do you get relief from any medications?
    Well painkillers of course help a bit but they cant do anything about the swollen feel and tensions.
    So i do not take anything because its not really worth it.

    I never tried any hard stuff like opioids though.

    Also tried muscle relaxants but did not helped at all.

    Quote:
    Curious if you've been checked by a rheumatologist?
    No but it has been tested by a regular doctor at some point.
    I also tried cortison multiple times. Its strange, it even makes the symptoms worse.

    Last edited by HelgeMattig; 09-07-2020 at 02:33 PM.

     
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    Old 09-07-2020, 07:47 PM   #6
    quincy
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    Re: 6 1/2 years sick and still no idea what it is, please help!

    Request to see a rheumatologist.

    q

     
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    Old 09-10-2020, 04:13 PM   #7
    HelgeMattig
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    Re: 6 1/2 years sick and still no idea what it is, please help!

    Quote:
    Originally Posted by quincy View Post
    Request to see a rheumatologist.

    q
    Despite the fact that cortison and manual therapy (not at the same time) made it worse?
    Shouldn't it have helped in that case?

     
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    Old 09-11-2020, 12:06 AM   #8
    quincy
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    Re: 6 1/2 years sick and still no idea what it is, please help!

    Maybe for that point exactly...that the steroids actually made it worse...and it's another avenue that you've never been down yet. It could be autoimmune related, and maybe one could do testing down avenues others haven't considered.

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    Old 09-14-2020, 05:43 PM   #9
    HelgeMattig
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    Re: 6 1/2 years sick and still no idea what it is, please help!

    There has been some basic testing related to autoimmune and rheuma by our family doctor at some point which showed no results.
    But then of course this guy is not an expert and i dont know what exactly he tested.

    Well there is one more thing that i want to check first but if that does not work out i guess your right and i should at least give it a try.

     
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    Old 09-15-2020, 10:40 AM   #10
    quincy
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    Re: 6 1/2 years sick and still no idea what it is, please help!

    The whole problem is that each doctor has different insight and knowledge. Some stay in the box....others venture outside of it.

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