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neurologist appointment

Posted , 11 users are following.

fed-up
fed-up

first appointment with neurology today (and last) and i think they dragged someone off the street and stuck a 'neurologist' badge on him. no use whatsoever, he could see i was so stressed by me crying my heart out and saying if i take one more pill i will take the lot, my feet and ankles are swollen and i can't get my boots on, i've gone from size 14 to an 18, i shouldn't even bee driving, i drop things, my words come out jumbled and all the rest of it. told him i have it on both sides and guess what he said? theres nothing i can do just keep taking the tablets. yes, really, thats what he said (in between words that i could understand as he could hardly speak a word of english). i've absolutely had enough of this. my poor son is going through his exams and he doesn't know if he will come home to find me alive or dead, i can't handle this. my life has stopped, i see people walking past my house with their dogs, my poor dog hasn't been out for months, the grass at the front is 3 feet tall, i just cannot go out, my life is just nothing. i can't take this anymore.

 

1 like, 46 replies

46 Replies

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  • Valkyrie
    Valkyrie fed-up

    Posted

    Also, if you are in the UK, I am on the other side of the world and your night is my day so if you are up at night, its likely i can still answer your posts. And others can, in the daytime. We are here.
  • colin69485
    colin69485 fed-up

    Posted

    I totally agree with Valkyrie - don't keep it to yourself, fed-up! If you feel like sending us messages, just do it. Yes, we care about you! 
  • colin69485
    colin69485 fed-up

    Posted

    Good morning - good to hear from you! Not sure how to put this but here goes: I think that you and your mum are both wrong! 10 years ago, I had life- threatening cancer and, after misdiagnoses, I found a wonderful surgeon who probably saved my life. As well as that, I had a wonderful group of friends who knew what I was facing and were simply brilliant in their love and support. That's 2 'wonderfuls' !!  The point is that you need both and you can explain that to your mum. We all need to use the internet wisely, be selective and keep an open mind. It's the same with health professionals, they're not miracle workers, they're just like you and I.

    Tell us a bit more about the 'pain clinic'. It sounds like a useful set-up.

    Stay strong and keep talking to the people that know how to listen. Colin x

    • fed-up
      fed-up colin69485

      Posted

      hi Colin, sorry its taken long to reply, please don't feel like you've offended me, seriously, tell it to me straight. what do you mean about being wrong please.
    • fed-up
      fed-up colin69485

      Posted

      where are you from Cloin? pain clinic do nerve blocks, offer accupuncture and other things
    • colin69485
      colin69485 fed-up

      Posted

      Hi. No problem - good to hear from you. What I meant was you and your mum - this is just my opinion! - are both wrong and right. The internet can be used wisely or irresponsibly. You use it sensibly, so in this case your mum doesn't understand this. Equally, you are wrong to think that we on this patient line know all the answers cost we don't! Some medics are brilliant and some aren't . That's what I meant and you are doing just fine with using the internet the way you are. Will write more later. Colin
    • colin69485
      colin69485 fed-up

      Posted

      It was really interesting to read some of the advice given by others writing to this forum. It was suggested you try Tegretol which makes total sense but I can't understand why you haven't been prescribed this in the first place. Tegretol is the drug of choice for TN and it was immediately given to me once I wa diagnosed withTN. You can't just buy it over the counter, of course, it would need to be prescribed by your GP, who would monitor your progress just as they would with any other prescribed drug. You can't just have a go and see how it works out! 

      I think the idea of copying an article, that gives the details of TN, to show to your family etc., is an excellent idea!

      I live in Kent, England.

    • fed-up
      fed-up colin69485

      Posted

      Hi Colin, i was given tegretol first, the side effects were awful, oxcarbazepine had no sife effects whatsoever, it was when i started taking gabapentin, good grief i was as high as a kite! doc said he can't prescribe pregablin as its too expensive? mother wouldn't believe anything if i printed anything off but then shes stright to her medical book when it comes to her! well was at docs on monday and yesterday i got the letter from pain clinic saying i had an appointment in july! i don't know wht he said to them but was flaming quick, it usually takes 6 months to hear fromm them! how come you haven't been offered pain clinic Colin? oxcarb drung is the newer sister drug to tegratol so you can go straight off tegretol and stright on to oxcarb.
    • fed-up
      fed-up

      Posted

      great, im in pain
    • Valkyrie
      Valkyrie fed-up

      Posted

      Are you in bed and does it help if you lie down or lie on one side or the other. Does it help if you keep your face warm or have a warm drink?

       

    • fed-up
      fed-up Valkyrie

      Posted

      i can't lay still with this, lol, i have a hot water bottle on it all morning and waiting for doc to call, not sure what he can do though! 
    • fed-up
      fed-up

      Posted

      doc rang and he's gven me oxycontin, he said if it hasn't worked by mon/tues then he will go to plan b, and i don't know what that will be.
  • Glor888
    Glor888 fed-up

    Posted

    Hi Fed up,

    Ive just sat and read all through the messages again. I've also noticed that you don't say if you've tried Tegretol or not. All I can suggest at this stage is try coming off your present medication, seeing as it doesn't work, and try going on Tegretol. Yes, there will be nausea, I hated that but persevered with it until it subsided, it was worth it in the end as I was fine after that. So try Tegretol it is rated as the best. You've got nothing to lose by trying it.

    I really hope everything gets sorted for you and soon. It may also help if you get a copy of the TN condition and give a copy each to your family to read so they have a better understanding of what you are going through.

    Good luck and do keep in touch.

    Kind regards

    Gloriana

     

  • Valkyrie
    Valkyrie fed-up

    Posted

    I agree with gloriana about getting a copy of info about trigeminal neuralgia for people to read. They really have no idea and its impossible to explain really. Also about the Tegretol. It works for many people.
  • colin69485
    colin69485 fed-up

    Posted

    Hi fed-up

    this is the third time I've tried to write this only for it to disappear somewhere and it's never saved! Here goes again!

    really sorry to hear that you are having such a miserable time and hope that your current drug helps you.

    i feel guilty when I read your comments and that of some other friends because Tegretol works just fine for me. At present, I'm pain- free and experience no side-effects! I'm trying to catch up on all the things I haven't done - preparing classes, visiting friends etc. A period of peace!!

    i do hope things improve for you, too. You deserve a break - we all do!

    take care. Colin x

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