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  • Newbie long term sufferin

    Hi all

    I have been diagnosed with Morbihan's disease which if I am entirely honest I do not agree with.

    I was given this diagnosis based on how I look NOT how I feel I can deal with the look it's the pain, tingling burning and sinus issues I cannot deal with made worse by to a large extent it's environment that makes it much worse.

    My understanding is that the condition is not only rare and difficult to treat but also painless, which is not the case for me.

    Strangely four months on Lymecycline have I improved the swelling but the pain and tingling still there.

    I am also working hard to avoid the environment triggers

    I went to a private Dermatologist who referred me to St John's in London she seemed to fear I had an auto immune problem such as Lyme's, Lupus or Wenger's but blood tests were inconclusive and the Punch biopsy of my eyelid showed signs of deep tissue Roscea but we're not conclusive either. Prior to the London appointment a private eye specialist came up with same diagnosis.

    I feel I am stuck with this diagnosis, but have seen ENT dentist oral medicine and allergist immunology patch tests etc etc and no one can find a reason [emoji3525]


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  • #2
    Originally posted by Andrew P View Post
    Hi all

    I have been diagnosed with Morbihan's disease which if I am entirely honest I do not agree with.

    I was given this diagnosis based on how I look NOT how I feel I can deal with the look it's the pain, tingling burning and sinus issues I cannot deal with made worse by to a large extent it's environment that makes it much worse.

    My understanding is that the condition is not only rare and difficult to treat but also painless, which is not the case for me.

    Strangely four months on Lymecycline have I improved the swelling but the pain and tingling still there.

    I am also working hard to avoid the environment triggers

    I went to a private Dermatologist who referred me to St John's in London she seemed to fear I had an auto immune problem such as Lyme's, Lupus or Wenger's but blood tests were inconclusive and the Punch biopsy of my eyelid showed signs of deep tissue Roscea but we're not conclusive either. Prior to the London appointment a private eye specialist came up with same diagnosis.

    I feel I am stuck with this diagnosis, but have seen ENT dentist oral medicine and allergist immunology patch tests etc etc and no one can find a reason [emoji3525]


    Sent from my WAS-LX1A using Tapatalk
    My entire face is swollen. You can look up my last post discussing it.

    Feel free to pm me or email me

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    • #3
      Originally posted by Weezer View Post
      My entire face is swollen. You can look up my last post discussing it.

      Feel free to pm me or email me
      At my worst I look like Quasimodo can barely see out of my left eye.

      Like you my hands flush red when held vertically.

      It's the constant burning tingling and sometimes pain all over I cannot handle







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      • #4
        Originally posted by Andrew P View Post
        At my worst I look like Quasimodo can barely see out of my left eye.

        Like you my hands flush red when held vertically.

        It's the constant burning tingling and sometimes pain all over I cannot handle



        Its awful. No one knows how to treat what I have, or even diagnose it.



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        • #5
          I have had lots of tests all pretty negative except high IgM which they assumed was due to swelling.

          Have you looked at what you use at all?

          Propylene Glycol is a definite trigger for me a blast of someone vaping near me my eyes and face swell instantly.

          Trouble is it's in everything.

          I have theory that I have always been allergic to it. I had a really bad reaction to metrodionzole oral lasted three days on it and dentist panicked and told me to stop I was beetroot red massive tingling burning running nose etc. I and they assumed it was the drug reaction but since vaping became so popular they realised that the drug stops the body processing propylene glycol and had to change instructions to warn to stop vaping.

          Trouble is I am shooting in the dark, unless you have a two plus two equals four illness they don't have a clue

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          • #6
            I truly hope you find the relief you deserve

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            • #7
              Andrew P did you find any relief? I am also diagnosed with Morbihan disease and suffer from flushing, severe swelling (huge!) and horrible nerve pain. You are the first person I find that have exactly the same symptoms as me. As you said Morbihan is usually not as painful. I guess I have neurogenic rosacea and Morbihan, probably these two are related somehow. But everything that treats the nerve pain worsens the edema and vice versa... I would really love to hear how you are doing and if you found something that helps as I am really struggling and don't know what to do the derms and docs are no big help at all..

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              • #8
                Originally posted by michellelarissa View Post
                Andrew P did you find any relief? I am also diagnosed with Morbihan disease and suffer from flushing, severe swelling (huge!) and horrible nerve pain. You are the first person I find that have exactly the same symptoms as me. As you said Morbihan is usually not as painful. I guess I have neurogenic rosacea and Morbihan, probably these two are related somehow. But everything that treats the nerve pain worsens the edema and vice versa... I would really love to hear how you are doing and if you found something that helps as I am really struggling and don't know what to do the derms and docs are no big help at all..
                Yes I have, no real discovery of magic pill though. Still happens sometimes and it's a battle most of Time I am 80-90% better than 18 months ago

                For me it is 100% allergic reaction, but to an unknown chemical. Been tested for all normal things for a reaction and zero.

                Both my old work and home made it happen so it looked like it was permanent.

                I found out by staying away for a few days and wearing new unwashed clothes my symptoms really improved.

                So I moved to somewhere with no near neighbours Nd just use basic stuff for household chores and personal use.

                My face and symptoms hugely improved, no way was it morpihan

                My best advice would be to try and discover if your symptoms change even slightly in different places etc.

                I look back on pictures of me from before the really bad symptoms started and still my eyes looked droopy and swollen all the time so.etimes worse than others so it had begun a longtime before the worst symptoms started.

                I was suicidal with it to be honest not due to the look but the to tingling burning sensations, disorientation, swollen sinuses and pain.

                Lots more to the journey if you want to know how many Dr I have seen etc.

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