appointment with throat specialist

colinone
colinone Member Posts: 1,039
edited 19. May 2009, 15:39 in Living with Arthritis archive
Hi Guys
As you know I was taken off the enbrel last month because of the side effects to my throat. I had an appointment with the throat specialist this morning, and see the rheumy 4pm this afternoon. after the camera up my nose and down my throat I was told I have RA in the muscles and its having an effect on my swallow,. The reason for my loss and change of voice RA of the voice box. I don’t want to put a damper on things and spoil my moaning record because I have never had a good moan on the sight, for the sake of others. 4 years ago I was training with the army and as fit as a fiddle, today I am a disabled person and virtually crippled I have RA and Pa from head to foot. One of my main attributes still left was my voice as I do public speaking and teaching I cant talk about it any more ill catch you later
Colin

Comments

  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Colin I am so sorry you have had this result, I wish there was something better I could say. I can just send you a cyber ((( ))) and take care, Cris x
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 18. May 2009, 09:08
    Dear Colin

    You really are a brave soldier. You are always so buoyant on the forum starting lots of threads and helping others with their worries and pain. You are a big asset on here. I can truly sense from your message today that you are distressed and feeling desperate and quite rightly so. Who wouldn't be? I wish I could say something that would be of comfort to you but I have come to a standstill.

    I do hope there is something they can do to stabilise or improve things for you.

    Life is a real b**ch at times. Today must be a truly horrid day for you.

    We are all here for you, you know that. Please pass on a cyber hug to your good wife as she must be really feeling it all very much and be so very worried about you.

    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • shonaarnold
    shonaarnold Member Posts: 35
    edited 30. Nov -1, 00:00
    Colin

    I am so sorry to hear your news. I only joined the site last week and have read lots of your posts. I received your email this morning and would like to thank you. This weekend was pretty awful for me and this site has kept me going. You are so kind and supportive to others and I'm sure that everyones thoughts are with you.

    Hope to catch up with you again soon

    Shona
  • kathbee
    kathbee Member Posts: 934
    edited 30. Nov -1, 00:00
    Colin, I am sorry to learn of your news today.

    You are always upbeat on the forum and support
    others so well.

    I will be thinking of you.
    Take care
    Love from Kath
  • joyful164
    joyful164 Member Posts: 2,401
    edited 18. May 2009, 18:07
    colinone wrote:
    Hi Guys
    As you know I was taken off the enbrel last month because of the side effects to my throat. I had an appointment with the throat specialist this morning, and see the rheumy 4pm this afternoon. after the camera up my nose and down my throat I was told I have RA in the muscles and its having an effect on my swallow,. The reason for my loss and change of voice RA of the voice box. I don’t want to put a damper on things and spoil my moaning record because I have never had a good moan on the sight, for the sake of others. 4 years ago I was training with the army and as fit as a fiddle, today I am a disabled person and virtually crippled I have RA and Pa from head to foot. One of my main attributes still left was my voice as I do public speaking and teaching I cant talk about it any more ill catch you later
    Colin

    Hi Colinone.

    Took my last posting off. Wasn't particularly helpful for you.
    Sorry to hear about your news. It seems like four steps forward, three back with the RA and PA. I have these from head to foot. But about your throat. What are they going to do for you at this stage?
    Would be interested to know. I'm sure you will soon get your head round this latest set back and find a way round it. Your sound the sort of person who does.

    Goodnight.
    Hope you feel better in he morning

    Joyful



    Joyful
  • frogmorton
    frogmorton Member Posts: 30,087
    edited 30. Nov -1, 00:00
    Oh Colin
    I know you don't like sympathy and don't moan, but I am very very sorry :(
    Take care
    Toni xx
  • ritnew
    ritnew Member Posts: 338
    edited 30. Nov -1, 00:00
    Hi Colin
    Sorry to hear your news. I'm sitting here with tears in my eyes thinking of you. Since I've been coming to this site I've looked on you as the sort of leader, always there with a word of encouragement, sympathy a wealth of knowledge and lots of very funny jokes.
    I know we're all thinking of you and I want to send all my best wishes to you and your wife.

    Take care.

    Rita X
  • mistywillow
    mistywillow Member Posts: 711
    edited 30. Nov -1, 00:00
    ritnew wrote:
    Hi Colin
    Sorry to hear your news. I'm sitting here with tears in my eyes thinking of you. Since I've been coming to this site I've looked on you as the sort of leader, always there with a word of encouragement, sympathy a wealth of knowledge and lots of very funny jokes.
    I know we're all thinking of you and I want to send all my best wishes to you and your wife.

    Take care.

    Rita X





    Hi Colin
    I am so sorry to hear that. You are so upbeat for everyone and are always making us smile. Its devastating having to face up to something new that arthur keeps throwing at you, and its ok to grieve about it and have a good old moan here. I wish I could offer something more constructive than just cyber support. Did the doctors offer anything to help the situation? You must command a lot of respect from your peers and collegues and I am sure that you will find a way to continue to impart your knowledge to them.
    love Gillx
  • debatat
    debatat Member Posts: 659
    edited 30. Nov -1, 00:00
    Dear Colin

    I am so sorry that you have to deal with this latest blow. Sometimes it can feel as though our illness is taking everything away from us. My illness causes me to lose my speech, I know how vulnerable it can make you feel. I hope that they are able to help you and that your rheumy appt went well.

    Sending you and your wife best wishes. Thinking of you

    Deb
  • oopie07
    oopie07 Member Posts: 18
    edited 30. Nov -1, 00:00
    hi colinone,

    i have been a user of the forum for about a month now - and it didn't take me long to realise that you stand out! you have very kind and supportive words for people (as do others) but you always take time out for others.
    i am sorry you have had the news you have, want to wish you well and hope things get a little better for you

    louise x
  • alicea
    alicea Member Posts: 111
    edited 19. May 2009, 03:40
    Hi Colin sorry you are feeling so low, I really do understand, you suddenly feel lost and that you cant cope anymore. You tell yourself every day to make the best of it but it causes so many problems to your life and stops you doing everything . As you say if you could sort out the pain you could a least do the things that matter to you. I hope you get some help , keep your chin up.alicea
  • mash65
    mash65 Bots Posts: 834
    edited 30. Nov -1, 00:00
    hi colin,im so sorry to hear your news.
    i cant offer anything more than the guys have already said.
    i really hope u bounce back soon,as ur such a great guy.
    im sending hugs((((())))) for u & yours, keep ur chin up,best wishes debsx
  • colinone
    colinone Member Posts: 1,039
    edited 30. Nov -1, 00:00
    Hi Guys Just want to say thank you to you all for you kind words and support your comments have lifted me, its good to know there are others who know how it feels. You know the worse thing for me is not having control over the illness I suppose many of you feel the same way. If I could just get the pain under control I would not care about the rest of it.
    I saw the Rheumy at 4 this afternoon and they will not chance putting me back on enbrel I am to start on Humira ( adalimumad ) the rheumy nurse will contact me over the next few days to discuss starting. I am to increase my Predniolone again up to 20mg a day and once stable with the Humira they will start to reduce. He wants me in hospital for a bone fusion ( never asked what that was about ill just take it has it comes some times the less you know the better ) you only worry about it. Well moan over guys lets get back to normal now, I have enough problems feeling sorry for myself without you guys saying such nice things to me but hey you truly are a great bunch and your support is second to none. Lets all go to the bar and ill get you a drink. Once again thank you so much.

    Reality is only an illusion that occurs due to a lack of alcohol.

    Colin
  • jackie1955
    jackie1955 Member Posts: 632
    edited 18. May 2009, 17:18
    Hi Colin,

    I am truly sorry that your appointment turned out to be so very upsetting for you. To be honest, I am at a loss as to what to say to comfort you.

    I've recently posted asking if anyone had problems with the front of their neck and/or with swallowing....... I even asked my rheumy nurse last week about it!

    Colin, have they said what they can do about these problems? I hope they can get your treatment sorted quickly.

    Sending you my best wishes, Jackie x



    OOOPS! Its now 22.17 - Just read your posting of 20.53,you must have done that while I was repying to your first post! I am delighted you sound much more upbeat! Colin it must be true what they say:

    You can'tkeep a good man down :)
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hello Colin,
    I just want to send you my love and a whole load of Good Wishes. I can't think of anything else to say, so I'll just second everything everyone else has said and add my support and love. Suexxxx
  • joanlawson
    joanlawson Member Posts: 8,681
    edited 30. Nov -1, 00:00
    Hi Colin

    I've only just caught up with this, and I would like to add my good wishes to you. As you say, it is the lack of control which is difficult to deal with. You have had a very responsible role in life, and have been master of your own destiny to a large extent, so it makes it harder in many ways. As so many others have said, you are a real star on this site, lifting our spirits most days with your advice, sympathy, and humour.Now it is our turn to support you in any way we can, and I do hope the doctors will be able to sort out some of your problems.

    With very best wishes

    Joan
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  • breane
    breane Member Posts: 392
    edited 30. Nov -1, 00:00
    Hi Colin,I have only just read your thread and I'm so sorry to hear about your throat problem.It must be very distressing for you and like other members I send you my good wishes and hope something can be done for it.You always seem such a cheerful person and the jokes you have posted have been so amusing and just reading them uplifts my day. :lol: Thinking of you. Luv Breane.x
  • jeannie2
    jeannie2 Member Posts: 135
    edited 30. Nov -1, 00:00
    You know, Colin, when you come on the site and are so supportive and wise, I, probably like many others, don't imagine you haing 'off' days. We grumble and moan and rant, but you just come back with a level of wisdom we haven't grown yet. Ta! for that. I'm sorry you've been feeling so down. I know EXACTLY what you mean .. you give up this, because you can't do it. Then you give up that because you can't to it and then it's something else. It's so b.....y frustrating. You'll come to the top again - you'll see.

    I'm beginning to agree with you about too much knowledge - now I've got a decent rheumy it's going to be 'get on with it and then let me out of here to get on with my life'.

    Incidentally, I've been off DMARDs for 18 months now but am being assessed for Humira shortly..I'll hold your hand if you'll hold mine! I'm nervous about it.

    Chin up, chucks. Wish I could find my magic wand!
    Jeannie S
  • melbland
    melbland Member Posts: 36
    edited 30. Nov -1, 00:00
    Hi Colin

    Just to say my thoughts are with you. You were there at my time of need and I would hope you appreciate that we are here for yours.

    Mel
  • joyous
    joyous Member Posts: 179
    edited 30. Nov -1, 00:00
    o my god is there no part of our body that this bloody ra doesn affect it gets worse and worse . so sorry bout your throat i really am , nightmare i no it can affect the heart as well i asked the rhemuy nurse on that one she said yes it can as well think thats why we have so many checks on us take care joy xxx