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  • michaela_rees
    Hi to all Does anyone find it unbearable going into shops or places with spot lights and halogen lights, almost everywhere has them now they are the worse for
    Message 1 of 17 , Dec 11, 2006
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      Hi to all
      Does anyone find it unbearable going into shops or places with spot
      lights and halogen lights, almost everywhere has them now they are the
      worse for me instant headaches, muscle tension and dissiness, and
      thats with my sunglasses on and cap, my headaches have not improved
      over four years now and there is nothing that i can take for them that
      helps, but trying to avoid the lights, which is impossible unless i
      stay home all day long with lights really low, its a nightmare and i
      don't why i have it this bad, the eye doctor said i have it to the
      exstreem, and he has not seen anyone with this amount of sensitivity
      to light as me, don't understand why it effects me so bad, i can't
      work because of it, and i want to work and do so much, but i can't,
      because i get really ill from it.
      Its a shame there is know help for us out there, they say its not life
      threatening, but to me it feel like it is, my life is crap and im in
      constant pain.
      Sorry if it a bit depressing.
      Michaela
    • ozzymommy1962
      Michaela I so understand your *pain* with shops and the such. In an office environment - with the flourescent lighting is the worst for me, along with
      Message 2 of 17 , Dec 11, 2006
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        Michaela

        I so understand your *pain* with shops and the such. In an office
        environment - with the flourescent lighting is the worst for me,
        along with department and grocery stores with the same lighting. I
        start my new job in an office on Dec. 12th - tomorrow, and I am so
        not looking forward to it all. I am doing it for the retirement and
        the paycheck. Not only is the lighting and sun bothersome, the
        computer itself can be quite difficult. One thing that adds to my
        *problem* is that I am dyslexic as well. I have had this FUN thing
        called Adies Pupil for 14 years - that I know of. Not a great
        combination at all. I have been dyslexic all of my life and I kind
        of taught myself how to read and all of that of which todays society
        gets special ed classes for. Headaches? I am a walking headache. I
        now take regular generic Ibuprifen at 600 mgs or perscription
        strength at 800 mgs. I only take this when I literally cannot take
        the pain any longer in my head (migranes) and do not want to deal
        with side effects from prescribed migrane drugs. I guess that I have
        delt with pain in my head for so long, that unless I'm almost
        throwing up I'm kind of used to it. People do get used to chronic
        pain. Had lots of scans and mri's and yes, I do still have a
        brain :o) My main wish with this *condition* is that my kids don't
        ever have to deal with it. From what I gather - they don't know if
        there can be a heredity issue with this.

        I guess what it all boils down to ~ for me, is this; though I may
        have my really bad days - to me, it's better than the alternative. I
        also thank God for overcast hazy and rainy days ;o)

        I wish all of you a Very Merry Christmas (even though it is probably
        not politically correct to do so now adays) and a Happy Happy New
        year!
        Kath

        --- In adie_syndrome@yahoogroups.com, "michaela_rees"
        <michaela_rees@...> wrote:
        >
        > Hi to all
        > Does anyone find it unbearable going into shops or places with
        spot
        > lights and halogen lights, almost everywhere has them now they are
        the
        > worse for me instant headaches, muscle tension and dissiness, and
        > thats with my sunglasses on and cap, my headaches have not
        improved
        > over four years now and there is nothing that i can take for them
        that
        > helps, but trying to avoid the lights, which is impossible unless
        i
        > stay home all day long with lights really low, its a nightmare and
        i
        > don't why i have it this bad, the eye doctor said i have it to the
        > exstreem, and he has not seen anyone with this amount of
        sensitivity
        > to light as me, don't understand why it effects me so bad, i can't
        > work because of it, and i want to work and do so much, but i
        can't,
        > because i get really ill from it.
        > Its a shame there is know help for us out there, they say its not
        life
        > threatening, but to me it feel like it is, my life is crap and im
        in
        > constant pain.
        > Sorry if it a bit depressing.
        > Michaela
        >
      • lucy gleeson
        hi michaela, really sorry to hear that, you may have already tried it but if not alternative therapies may well help with the pain - they are also very
        Message 3 of 17 , Dec 12, 2006
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          hi michaela,
          really sorry to hear that,
          you may have already tried it but if not alternative
          therapies may well help with the pain - they are also
          very relaxing.
          as i said i had some phytobiophysics treatment and
          although it was fairly expensive to have a few
          treatments, it was well worth it as i found out alot
          more about why my body was doing odd things than when
          i went to the eye hospital!
          take care & happy christmas!
          lucy
          x

          if you look up www.phytob.com - you'll find out more
          about it.

          --- michaela_rees <michaela_rees@...> wrote:

          > Hi to all
          > Does anyone find it unbearable going into shops or
          > places with spot
          > lights and halogen lights, almost everywhere has
          > them now they are the
          > worse for me instant headaches, muscle tension and
          > dissiness, and
          > thats with my sunglasses on and cap, my headaches
          > have not improved
          > over four years now and there is nothing that i can
          > take for them that
          > helps, but trying to avoid the lights, which is
          > impossible unless i
          > stay home all day long with lights really low, its a
          > nightmare and i
          > don't why i have it this bad, the eye doctor said i
          > have it to the
          > exstreem, and he has not seen anyone with this
          > amount of sensitivity
          > to light as me, don't understand why it effects me
          > so bad, i can't
          > work because of it, and i want to work and do so
          > much, but i can't,
          > because i get really ill from it.
          > Its a shame there is know help for us out there,
          > they say its not life
          > threatening, but to me it feel like it is, my life
          > is crap and im in
          > constant pain.
          > Sorry if it a bit depressing.
          > Michaela
          >
          >


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        • michaela_rees
          Hi Thanks for your emails Im not coping with this very well,do you think the pain can still ease after four years or unlikly to now ?, i couldn t bare to think
          Message 4 of 17 , Dec 12, 2006
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            Hi
            Thanks for your emails
            Im not coping with this very well,do you think the pain can still ease
            after four years or unlikly to now ?, i couldn't bare to think of
            having it like this for the rest of my life.
            I don't understand why i am reacting to the light so badly, even when
            lights are really low, it causes even the nerves under my feet to
            tence, when light enters my eyes its horrible, has anyone have any
            ideas why it could be affecting me so badly.
            I had some medication for a few days for back pain, i was afraid to
            take them for a week, it was like something telling me not too, but i
            ended up taking them, within three days i had Adies, im just thinking
            the tablets did this, and it has done something with my nerves, to
            make me be in so much pain.
            I should of listened to that inner voice.
            Michaela
          • Trish
            I don t think the Meds brought on the Adie s. It was probably already there thats why you had back pain & headaches which is brought on by the light. My neck
            Message 5 of 17 , Dec 12, 2006
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              I don't think the Meds brought on the Adie's. It was probably
              already there thats why you had back pain & headaches which is
              brought on by the light. My neck and head are killing me right now.
              I usually don't suffer much but I've been having a bad spell, mostly
              brought on by Holiday stress I do believe not to mention all the
              holiday lights.
              Good Luck .... Merry Christmas
              >
              > Hi
              > Thanks for your emails
              > Im not coping with this very well,do you think the pain can still
              ease
              > after four years or unlikly to now ?, i couldn't bare to think of
              > having it like this for the rest of my life.
              > I don't understand why i am reacting to the light so badly, even
              when
              > lights are really low, it causes even the nerves under my feet to
              > tence, when light enters my eyes its horrible, has anyone have any
              > ideas why it could be affecting me so badly.
              > I had some medication for a few days for back pain, i was afraid
              to
              > take them for a week, it was like something telling me not too,
              but i
              > ended up taking them, within three days i had Adies, im just
              thinking
              > the tablets did this, and it has done something with my nerves, to
              > make me be in so much pain.
              > I should of listened to that inner voice.
              > Michaela
              >
            • pieterb12
              Hi Michaela, Ever tried pilocarpine eye-drops? The normal solution of 1 or 2% is much too strong and is really for another purpose ( glaucoom in dutch), but
              Message 6 of 17 , Dec 13, 2006
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                Hi Michaela,

                Ever tried pilocarpine eye-drops?
                The normal solution of 1 or 2% is much too strong and is really for
                another purpose ("glaucoom" in dutch), but thru the years my
                opthalmologist and I tried lighter ones, so nowadays I use 1/16%
                pilocarpine. (once I tried 1/8% but it was still too strong)
                I also have pains and stings in my affected eye, especially in summers
                and also in bright artificial light(also computer-screens), but when I
                administer the drops a few times a day, my pupil constricts and I
                don't have to bother for a few hours and my pains are completely
                reliefed!(and they were severe...).
                My opthalmologist and pharmacist ensured me that it isn'y harmfull to
                use the drops on a daily basis... Since the industry standard of
                pilocarpine is higher, my pharmacist had to look it up and make the
                drops himself, but nowadays I get new ones every month and keep em in
                the fridge.
                Besides good sunglasses for outdoors, when your pain is really coming
                from excess of light in your eyes, you really should consider this...
                Good luck!
                Best regards Pieter (Netherlands)

                --- In adie_syndrome@yahoogroups.com, "michaela_rees"
                <michaela_rees@...> wrote:
                >
                > Hi to all
                > Does anyone find it unbearable going into shops or places with spot
                > lights and halogen lights, almost everywhere has them now they are the
                > worse for me instant headaches, muscle tension and dissiness, and
                > thats with my sunglasses on and cap, my headaches have not improved
                > over four years now and there is nothing that i can take for them that
                > helps, but trying to avoid the lights, which is impossible unless i
                > stay home all day long with lights really low, its a nightmare and i
                > don't why i have it this bad, the eye doctor said i have it to the
                > exstreem, and he has not seen anyone with this amount of sensitivity
                > to light as me, don't understand why it effects me so bad, i can't
                > work because of it, and i want to work and do so much, but i can't,
                > because i get really ill from it.
                > Its a shame there is know help for us out there, they say its not life
                > threatening, but to me it feel like it is, my life is crap and im in
                > constant pain.
                > Sorry if it a bit depressing.
                > Michaela
                >
              • michaela_rees
                ... them that ... summers ... when I ... to ... in ... coming ... this... ... spot ... are the ... and ... improved but trying to avoid the lights, which is
                Message 7 of 17 , Dec 14, 2006
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                  > > over four years now and there is nothing that i can take for
                  them that
                  > > helps,--- In adie_syndrome@yahoogroups.com, "pieterb12"
                  <pieterb12@...> wrote:
                  >
                  > Hi Michaela,
                  >
                  > Ever tried pilocarpine eye-drops?
                  > The normal solution of 1 or 2% is much too strong and is really for
                  > another purpose ("glaucoom" in dutch), but thru the years my
                  > opthalmologist and I tried lighter ones, so nowadays I use 1/16%
                  > pilocarpine. (once I tried 1/8% but it was still too strong)
                  > I also have pains and stings in my affected eye, especially in
                  summers
                  > and also in bright artificial light(also computer-screens), but
                  when I
                  > administer the drops a few times a day, my pupil constricts and I
                  > don't have to bother for a few hours and my pains are completely
                  > reliefed!(and they were severe...).
                  > My opthalmologist and pharmacist ensured me that it isn'y harmfull
                  to
                  > use the drops on a daily basis... Since the industry standard of
                  > pilocarpine is higher, my pharmacist had to look it up and make the
                  > drops himself, but nowadays I get new ones every month and keep em
                  in
                  > the fridge.
                  > Besides good sunglasses for outdoors, when your pain is really
                  coming
                  > from excess of light in your eyes, you really should consider
                  this...
                  > Good luck!
                  > Best regards Pieter (Netherlands)
                  >
                  > --- In adie_syndrome@yahoogroups.com, "michaela_rees"
                  > <michaela_rees@> wrote:
                  > >
                  > > Hi to all
                  > > Does anyone find it unbearable going into shops or places with
                  spot
                  > > lights and halogen lights, almost everywhere has them now they
                  are the
                  > > worse for me instant headaches, muscle tension and dissiness,
                  and
                  > > thats with my sunglasses on and cap, my headaches have not
                  improved
                  but trying to avoid the lights, which is impossible unless i
                  > > stay home all day long with lights really low, its a nightmare
                  and i
                  > > don't why i have it this bad, the eye doctor said i have it to
                  the
                  > > exstreem, and he has not seen anyone with this amount of
                  sensitivity
                  > > to light as me, don't understand why it effects me so bad, i
                  can't
                  > > work because of it, and i want to work and do so much, but i
                  can't,
                  > > because i get really ill from it.
                  > > Its a shame there is know help for us out there, they say its
                  not life
                  > > threatening, but to me it feel like it is, my life is crap and
                  im in
                  > > constant pain.
                  > > Sorry if it a bit depressing.
                  > > Michaela
                  > >
                  >
                • michaela_rees
                  Hi I have tried pilicarpine at 1% to 10 saline and that was to strong, i will ask my doctor if i could try a weaker solution, i don t see a eye doctor anymore
                  Message 8 of 17 , Dec 14, 2006
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                    Hi
                    I have tried pilicarpine at 1% to 10 saline and that was to strong, i
                    will ask my doctor if i could try a weaker solution, i don't see a eye
                    doctor anymore they couldn't do anything for me.
                    I do have pain in my back i have had back pain for years ,but never
                    suffered from headaches at all untill i got Adies, so how could it of
                    always have been there, and what does bachache have to do with Adeis a
                    dilated pupil, there is billions with back problems, but Adies is so
                    rear, if Adies has anything to do with back problems or neck problems,
                    there would be more of us, its probably autoimune or a viris or a
                    chemical reaction to our bodies.
                    Has anyone been offered Gabapentine, don't know if i spelt this right,
                    its for fits, its surpose to help nerve pain, i haven't tried it, im
                    just afraid i get horrible sideffects and get more problems with my
                    health, i can't see it helping me, because its only when the light
                    hits my eyes the pain hits, its not going to stop the light entering
                    my eye, when i go in the dark the pain leaves, so i can't see how that
                    will help.
                    Michaela
                  • pieterb12
                    Hi, although Adies could have some origin in auto-immune diseases according to researchers, everybody has different circumstances and symptoms, with some
                    Message 9 of 17 , Dec 14, 2006
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                      Hi,

                      although Adies' could have some origin in auto-immune diseases
                      according to researchers, everybody has different circumstances and
                      symptoms, with some obvious sypmtoms in common that point to Adies'...
                      but that makes Adies's a syndrome rather than a disease...but my
                      common sense and the advice several experts gave me, make me believe
                      that statistically seen, all other symptoms and aches are just as
                      common as in every other random person... for your own benefit and
                      state of mind it is best to cope with the Adies' symptoms and see
                      other things just as common things amongst a lot of people. Although
                      nothing is for sure with Adies', most research points to the fact that
                      it isn't life threatening or disabling, although it can severely
                      bother you of course...
                      But take your eyes for granted as they are and just live your life to
                      the max, by worrying and feeling sorry for your self, life doesn't get
                      easier or more fun and thereby only gets shorter!

                      I would definitely try these pilocarpine solutions I described
                      earlier, because it helped me to get rid of the worst symptoms and
                      pains in my affected eye and that's just the area that is common for
                      sure in all of us people... and I heard several good stories from
                      other affected people who use it.
                      My advice is to make a new appointment with you opthalmologist, you
                      can always ask for that, and discuss the pilocarpine thing. After that
                      you can discuss the drops with your local pharmacist. I can give you
                      the exact recipe, with all the other fluids in it, of my eye drops...
                      for both solutions...
                      So give it a try, and let me know if I should provide you with more
                      info...It helped me and made me from a weak moaring patient to a
                      regular individual, just doing his job and everything a "normal"
                      person does everyday...going out and have fun.
                      Wish you all a jolly good Christmis!
                      Pieter

                      --- In adie_syndrome@yahoogroups.com, "michaela_rees"
                      <michaela_rees@...> wrote:
                      >
                      > Hi
                      > I have tried pilicarpine at 1% to 10 saline and that was to strong, i
                      > will ask my doctor if i could try a weaker solution, i don't see a eye
                      > doctor anymore they couldn't do anything for me.
                      > I do have pain in my back i have had back pain for years ,but never
                      > suffered from headaches at all untill i got Adies, so how could it of
                      > always have been there, and what does bachache have to do with Adeis a
                      > dilated pupil, there is billions with back problems, but Adies is so
                      > rear, if Adies has anything to do with back problems or neck problems,
                      > there would be more of us, its probably autoimune or a viris or a
                      > chemical reaction to our bodies.
                      > Has anyone been offered Gabapentine, don't know if i spelt this right,
                      > its for fits, its surpose to help nerve pain, i haven't tried it, im
                      > just afraid i get horrible sideffects and get more problems with my
                      > health, i can't see it helping me, because its only when the light
                      > hits my eyes the pain hits, its not going to stop the light entering
                      > my eye, when i go in the dark the pain leaves, so i can't see how that
                      > will help.
                      > Michaela
                      >
                    • michaela_rees
                      Hi Peiter Could you send me the solution ingredients, i could ask my doctor if he could give me a prescription to try it, thankyou. I understand what you say,
                      Message 10 of 17 , Dec 15, 2006
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                        Hi Peiter
                        Could you send me the solution ingredients, i could ask my doctor if
                        he could give me a prescription to try it, thankyou.
                        I understand what you say, i am trying to find ways to help, but
                        things are not good, i can't go out and have fun and im struggling
                        even at home with light turned right down, the pain never stops, it
                        eases in dim lighting but starts again when lighting changes or gos a
                        little brighter, it gets so bad my whole body gets tence, i just want
                        something to help control the pain so i can be more normal and do
                        things without having constant headaches.
                        Everybody has it differantly and most can have a fairly normal life,
                        like all illness some have it worse than others, the eye doctor said i
                        had it to the exstreem and did not know why it is so bad, they don't
                        know much about this problem, its probably my body make up or a very
                        low pain threshold, but to me its severe and disabling my life, and i
                        need to find something to help so i can get out and cope with going
                        places and at home.
                        thanks for the infomation i will look into this again.
                        Regard Michaela
                      • pieterb12
                        Hi Michaela, my eyedrops bottle says: -SOL BENZALK ET AC BOR 60 ML (that s only solution fluids and can differ) -PILOCARPINI HYDROCHLORIDUM 37.5 MG
                        Message 11 of 17 , Dec 15, 2006
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                          Hi Michaela,

                          my eyedrops bottle says:
                          -SOL BENZALK ET AC BOR 60 ML (that's only solution fluids and
                          can differ)
                          -PILOCARPINI HYDROCHLORIDUM 37.5 MG

                          the pilocarpine is the most important, as it is the stuff that
                          constricts your pupil... this ammount is the exact dosis for one
                          bottle, but as a percentage, it is: 1/16% so "one sixteenth"...
                          This one works perfectly for me, but as i said earlier, you could also
                          try 1/8th%, but that's too strong for me...try it out, it helped me
                          and since it seems a logical fysical thing to me, like a camera with
                          the lens-opening to big, there's to much light and the picture gets
                          too bright...same with the eye, so I assume it will work for you...
                          The first days it's a bit a strange feeling, because you and your eye
                          are not used to external forces, but later on the feeling gets natural
                          and you don't notice a thing when you administer the drops, except
                          that after 15 minutes your pupil gets small en stays for say two
                          hours... you have to try for your self...
                          Good luck!
                          Pieter

                          PS If nescessary I can ask my pharmacist for extra info on the recipe


                          --- In adie_syndrome@yahoogroups.com, "michaela_rees"
                          <michaela_rees@...> wrote:
                          >
                          > Hi Peiter
                          > Could you send me the solution ingredients, i could ask my doctor if
                          > he could give me a prescription to try it, thankyou.
                          > I understand what you say, i am trying to find ways to help, but
                          > things are not good, i can't go out and have fun and im struggling
                          > even at home with light turned right down, the pain never stops, it
                          > eases in dim lighting but starts again when lighting changes or gos a
                          > little brighter, it gets so bad my whole body gets tence, i just want
                          > something to help control the pain so i can be more normal and do
                          > things without having constant headaches.
                          > Everybody has it differantly and most can have a fairly normal life,
                          > like all illness some have it worse than others, the eye doctor said i
                          > had it to the exstreem and did not know why it is so bad, they don't
                          > know much about this problem, its probably my body make up or a very
                          > low pain threshold, but to me its severe and disabling my life, and i
                          > need to find something to help so i can get out and cope with going
                          > places and at home.
                          > thanks for the infomation i will look into this again.
                          > Regard Michaela
                          >
                        • pieterb12
                          just for sure: 1/16th = 0.0625% 1/8th = 0.1250% ... said i
                          Message 12 of 17 , Dec 15, 2006
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                            just for sure:

                            1/16th = 0.0625%
                            1/8th = 0.1250%


                            --- In adie_syndrome@yahoogroups.com, "pieterb12" <pieterb12@...> wrote:
                            >
                            > Hi Michaela,
                            >
                            > my eyedrops bottle says:
                            > -SOL BENZALK ET AC BOR 60 ML (that's only solution fluids and
                            > can differ)
                            > -PILOCARPINI HYDROCHLORIDUM 37.5 MG
                            >
                            > the pilocarpine is the most important, as it is the stuff that
                            > constricts your pupil... this ammount is the exact dosis for one
                            > bottle, but as a percentage, it is: 1/16% so "one sixteenth"...
                            > This one works perfectly for me, but as i said earlier, you could also
                            > try 1/8th%, but that's too strong for me...try it out, it helped me
                            > and since it seems a logical fysical thing to me, like a camera with
                            > the lens-opening to big, there's to much light and the picture gets
                            > too bright...same with the eye, so I assume it will work for you...
                            > The first days it's a bit a strange feeling, because you and your eye
                            > are not used to external forces, but later on the feeling gets natural
                            > and you don't notice a thing when you administer the drops, except
                            > that after 15 minutes your pupil gets small en stays for say two
                            > hours... you have to try for your self...
                            > Good luck!
                            > Pieter
                            >
                            > PS If nescessary I can ask my pharmacist for extra info on the recipe
                            >
                            >
                            > --- In adie_syndrome@yahoogroups.com, "michaela_rees"
                            > <michaela_rees@> wrote:
                            > >
                            > > Hi Peiter
                            > > Could you send me the solution ingredients, i could ask my doctor if
                            > > he could give me a prescription to try it, thankyou.
                            > > I understand what you say, i am trying to find ways to help, but
                            > > things are not good, i can't go out and have fun and im struggling
                            > > even at home with light turned right down, the pain never stops, it
                            > > eases in dim lighting but starts again when lighting changes or gos a
                            > > little brighter, it gets so bad my whole body gets tence, i just want
                            > > something to help control the pain so i can be more normal and do
                            > > things without having constant headaches.
                            > > Everybody has it differantly and most can have a fairly normal life,
                            > > like all illness some have it worse than others, the eye doctor
                            said i
                            > > had it to the exstreem and did not know why it is so bad, they don't
                            > > know much about this problem, its probably my body make up or a very
                            > > low pain threshold, but to me its severe and disabling my life, and i
                            > > need to find something to help so i can get out and cope with going
                            > > places and at home.
                            > > thanks for the infomation i will look into this again.
                            > > Regard Michaela
                            > >
                            >
                          • michaela_rees
                            Hi Pieter Thankyou for info, i will see my doctor, it will be next Friday now before i can see him, so i will ask him for a prescription for the same dose that
                            Message 13 of 17 , Dec 15, 2006
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                              Hi Pieter
                              Thankyou for info, i will see my doctor, it will be next Friday now
                              before i can see him, so i will ask him for a prescription for the
                              same dose that your on.
                              I will be in touch and let you know how i get on, thanks again, you
                              ahave given me a little bit of hope back.
                              Hope you have a peaceful and enjoyable Christmas and the same to the
                              rest of the group.
                              Kind regards Michaela
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