My Bad news

debatat
debatat Member Posts: 659
edited 13. Dec 2009, 19:51 in Living with Arthritis archive
Hi all, I haven't been posting much lately. I had my pain clinic appt last week. I went expecting to get an injection in my spine, which is what I had been referred for! The consultant examined me and said I had neuropathy and myopathy caused by a severe primary neurologic disease. The damage already done is permanent. He believes it to be Multiple Sclerosis and wants me referred urgently to a neurologist for further tests. He said it could be the lupus attacking the spinal cord, but it is very rare, and it would need very aggressive treatment.
To say I was stunned is an understatement!! :shock: I am struggling with this news as it feels like one thing too many.
I have been trying to get an appt with my gp to see what my next step is but can't get in.

Deb

Comments

  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    Deb I am so sorry to hear your news and can quite understand that you are reeling from what you have been told.

    I presume that now that they have made this presumptive diagnosis that they will be fast-tracking you through to see someone ASAP?

    It must be tough knowing what to think and do right now - have you thought of ringing the helpline people in the morning? I am sure they would be happy to talk things through with you and advise you on who you could contact for extra support.

    sorry I can't do more right now than let you know I am thinking of you and sending lots of hugs your way (((((((((((())))))))))))
    WOnky
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    I am sure you are very upset about this news.I can only hope you will keep us posted.As Wonky said it is a presumptive diagnosis so keep this in mind for the time being,
    My thoughts are with you,take care
    Elizabeth
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • sharmaine
    sharmaine Member Posts: 1,638
    edited 30. Nov -1, 00:00
    Hi Deb

    I'm sorry to hear your news. I had the same trouble trying to see my GP. In the end I wrote her a letter explaining my problems and knowing my case history she increased my pain meds. I received a call telling me to collect the prescription. I didn't want to see anyone else but her as it just takes too long to explain my med history!!! Could you write a letter too? You may get an appointment quickly if she contact your GP this way. Some surgeries can often make telephone appointments with your GP.

    Take care and I hope you manage to get an appointment soon.

    Regards
    Sharmaine
  • angel1
    angel1 Bots Posts: 1,464
    edited 30. Nov -1, 00:00
    I had wondered if something was wrong Deb, as you haven`t been in the cafe to talk books with me!

    My heart goes out to you, and I hope you can try and keep hopeful, until you get a more definite diagnosis.

    Please know that I care..........Much love.........Ange.
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Deb,

    You have had a huge knock with this and I am glad you have come and told us. I wish I could do more than send you a ((( ))) and support but till it has been diagnosed by the Neuro's they may be wrong. I really hope they will get you seen soon as the waiting is not a good thing. I wish I could say something to help Deb but as Ange says know we care. Luv Cris xx
  • oneday
    oneday Member Posts: 1,434
    edited 30. Nov -1, 00:00
    Hi Debs
    sorry to hear of your news. Its a shock but the good thing is they are going to refer you quicky and the second thing it may not be MS. I wish you all the best.
    Consultants come straight out with things sometimes which is too much to take in and what you dont want to hear either.
  • kathbee
    kathbee Member Posts: 934
    edited 30. Nov -1, 00:00
    So sorry to hear your news Debs
    No wonder you are in shock.

    Hopefully things
    will turn out better than the initial diagnosis
    and you will get a lot of support and help.

    Love Kath
  • annie_mial
    annie_mial Member Posts: 5,614
    edited 30. Nov -1, 00:00
    Oh Debs, I am so sorry, it must be a dreadful shock. Do keep us updated when you feel able to.........I can understand about you not wanting to post much, but we will be waiting to help as best we can.

    Love
    Annie
  • evabuk
    evabuk Member Posts: 108
    edited 30. Nov -1, 00:00
    Oh Debs, you poor love - like all the others, I just don't know what to say.

    Gettting to the bottom of what's going on has to be a priority...the waiting is a nightmare, I know as I'm in a bit of a similar situation at the moment.

    I'll say a prayer for you and hope you can get some answers soon!

    lots of love
    Eva
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Dear Deb

    My heart goes out to you and you are a brave girl to call in on here and let us know. It is good to talk about it, much better than bottling it all up. You must surely be in shock, anyone would be. It is just one thing to many to take in for you and the waiting is a terrible time for all.

    I do hope that you will feel able to call in here as and when and you will always be made extra welcome, but I hope you know that already.

    Love
    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.
  • dachshund
    dachshund Member Posts: 9,135
    edited 30. Nov -1, 00:00
    Hi Deb.
    i'm so sorry to read you have this problem
    i hope you can get in touch with your doctor tomorrow.
    i think when you see the doc at the pain c he
    write's to your doc to tell him/ her what he thinks.
    all the best.
    joan xx
    take care
    joan xx
  • trisher
    trisher Member Posts: 9,263
    edited 30. Nov -1, 00:00
    Debs

    I have just seen this post. I'm sorry about your latest news. As Cris said they could be wrong, sometimes they are.

    Send your GP a letter, or keep phoning. your doctor must be there for you one day.

    I hope that you get sorted and will keep my fingers crossed for you.

    You know we are all here for you, don't stay away.

    love Trish xx
  • gickygawky
    gickygawky Member Posts: 478
    edited 30. Nov -1, 00:00
    Hi Deb,

    I am sorry to hear your news, it must be a real shock after having expected something quite different to happen in your appointment.
    Try and keep your chin up while you are getting an official diagnosis- it can seem like an eternity but you will be getting to the bottom of your problems and from there you will be able to access exactly the right treatment for you.

    Keep in touch with us as we will all be thinking of you.

    Arna x
  • jackie1955
    jackie1955 Member Posts: 632
    edited 30. Nov -1, 00:00
    Hi Debs,

    Oh honey, I am so sorry to read of this latest news. As you say, it 'feels like one thing too many' :( I know what you mean, and sometimes I wonder just how much one person can take.

    Debs, you are no-quitter, and once the news has sunk in I am sure you will find the strength to fight this latest bl**dy obstacle.

    Keep your spirits up,

    Jackie xx
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
    Hi Debs,

    What a shock for you Debs ':shock:'

    Like the other peeps I am so sorry to hear your news ':('.

    just wanted you to know I am thinking about you...and sending you lots of hugs. <<<<<<<>>>>>>

    I hope you do get to see your doc really soon so that he can answer some of your questions.

    glad you posted so that we can support you. Iris x
  • debatat
    debatat Member Posts: 659
    edited 30. Nov -1, 00:00
    Thank you all for your support, I wasn't expecting so many kind words. I really appreciate it!

    I know I will bounce back, it is just taking me a little longer than normal. Probably because as you say, I was expecting it to be 'fixed'. So to be told it is unfixable is a shock.

    Once again a huge thank you to you all!!

    Deb x
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hi, You must be finding it all a too much to take in at the moment, but remember its not definate yet. The MS society is also a very good place to find information and they offer lots of hope, with details of new treatments.

    I hope that you get a quick appointment, and will be thinking of you. Lots of love Sue xxxxx

    PS Is it possible for you to book a phone call with your GP? If you could talk to him, he may be able to arrange an appointment for you. My GP does this system. You could give it a try with the receptionist, tell them that you are very worried and need to talk. Hope you get an appointment soon, love Sue xxxx
  • chris7
    chris7 Bots Posts: 2,696
    edited 30. Nov -1, 00:00
    Deb

    So sorry I have only just logged on today to see this, just wanted to call in and send a bucket of hugs to you. I do hope you get an appointment with your GP as soon as possible and that you can take a bit of comfort from all the good wishes above. I do hope things are not as bad as you fear. Do keep in touch with us and let us know how you are.
    God bless
    Chris xx

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