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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

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  • fed-up
    fed-up

    Posted

    thanks everyone, i really appreciate it, i am thinking of writing to the hospital and complaining about the neuro, he clearly shouldn't be in that job. thankfully i have a good doctor, im seeing him on monday and i don't think he will be impressed either. i have this on both sides and i have my heart set on MVD to at least give me some relief while the other side is going, i don't want the injections and stuff, i don't want to be meddled with and having it not working or getting worse, i shall endup ripping the damn nerve out myself! i'll see what happens at the docs on monday, but its all waiting around and wasting  time!, il let you all know how it goes.
  • colin69485
    colin69485 fed-up

    Posted

    Hi again

    Firstly, good luck with your visit to the GP. I'm so pleased that you have a good relationship with them. That's a huge plus!

    Personally, I wouldn't waste my precious energy making an official complaint against the neurologist. I'd focus on all the bits that are working for you. You need some positive stuff going for you, and although complaining may bring some satisfaction, this might not be the right to get embroiled in all that. Hope that doesn't sound like I'm preaching at you - that's simply my view. 

    Good luck, fed-up! Colin x

  • Valkyrie
    Valkyrie fed-up

    Posted

    I agree with Colin on not wasting your time making an official complaint against the Neurologist. However, nothing wrong with letting your GP know. Maybe they will not refer anyone else to that particular one. Use all your energy on pushing your own case forward. Energy is a bit like petrol, there is only so much in the tank so use yours you get help
  • fed-up
    fed-up

    Posted

    hi all

    i just don't know where to turn, im on 2100mg of gabapentin and 2100mg of oxcarbazepine and have pain coming through that now, whats next? everytime my dose is put up it gives relief for a week or 2 and then the pain comes back. i can't keep up the dose cus when i get to the max dose whats left to try? mine must me a fantastic case of TN if the pain keeps coming back on such high doses!!

    i'd also like to know what is a successful 'candidate' for MVD as that useless neuro said only in exceptional cases they do MVD, and i know for a fact he's lying! i would have thought my having it on both sides was exceptional!!!!!! all this waiting for appointments for months on end, its ok if you have the money to go private!

  • colin69485
    colin69485 fed-up

    Posted

    Hi fed-up.

    have you seen your GP yet? You said that they were good and you work well together. What is their take on the situation? Complaining about the neurologist doesn't sound the way forward. Have you fedback all your experiences and concerns to the GP? They can refer you elsewhere.

    You may well be right about the financial side of things. It could be that it comes down to money but you really do sound like a priority! Colin x

  • fed-up
    fed-up

    Posted

    hi Colin

    my doctors appointment is on monday, il let you know of the outcome,  i just don't understaned how come it keeps breaking through the tablets and im on such a high dose! its drving me mad sad 

  • colin69485
    colin69485 fed-up

    Posted

    Hi again

    Please do, I really hope it goes well for you - you deserve some support and above all, a way forward! I hope what I'm about to say doesn't sound patronising in any way but when you see you GP, give her/him the hard facts about your experience with the neurologist, don't 'slag' the specialist off. From what you've said about your experience with the specialist, the GP will draw their own conclusions! You want the GP rooting for you now, not wary of you!. Do forgive me but I'm speaking from experience!

    Best wishes for Monday - calmly take control!

    Colin x

    • fed-up
      fed-up colin69485

      Posted

      hi colin, no your not patronising at all, i'll let my mum do the talking shes good at that! its driving me mad!
    • fed-up
      fed-up

      Posted

       neuro wrote to doc and wrote a load of rubbish saying he said and suggested this, that and the other, he did no such thing, so im on max dose of one tablet and won't be long before on max dose of the other, doc said he will refer me to pain clinic for nerve blocks, but those make this pain worse not better. so i don't care now, i will self medicate with these tablets theres no way im going to feel any pain so, yes, i will be overdosing i don't care anymore. no wonder this is called the suicide disease. mum said she understood everything my doc said and she said if i didn't then i must be 'bloody stupid' and thats from my own mother. i haven't got any friends to talk to either.
    • colin69485
      colin69485 fed-up

      Posted

      Hi fed-up

      Things don't seem to going to plan and you're in a bad place, at the moment. When you say that the neurologist wrote to your GP and what he said didn't match up with your recollections, were the suggestions positive and constructive? Did your GP feel that these represented a way forward for you? Have you had nerve block treatment before? Did your GP suggest a course of counselling? You need someone to talk to, someone experienced in providing the support you need. Obviously your mum isn't that person! 

    • Valkyrie
      Valkyrie fed-up

      Posted

      We are your friends and you are talking to us so keep communicating. I read on another discussion that someone had successfully tried gluten free and it had worked for them. Personally, i am finding that the less stress i have, the less pain i get. Dont get me wrong, it doesnt go away but its less. Reading your post makes me feel angry for the way you have been left to fend for yourself You may have said before so forgive me if you have and i have forgotten but where the hell are you if the medical profession can treat you this way? Is there no health complaints line? Maybe call a suicide prevention line and ask them to help you make the medicos listen. Or get on a radio talkback, or write to your MP> Dont let them do this to you.. and remember, there may be others travelling the same dark road who dont even have a support group and your fightback may help them also. I know we cant give you a real hug but if we could, we would. If you can, get into your bed for a few days and dont get out til you get some strength backthat's what i did once). Tell mum the pills make you stupid (even if they dont) and see if you can get some understanding of how horrible this condition is.I try to think of someone in your family you can talk to. And please keep talking to us
    • fed-up
      fed-up colin69485

      Posted

      i keep trying to explain to mum how bad this thing is and she keeps saying she understands but she doesn't, she has no clue, she has rheumatoid arthritis and she has to be worse than everyone else she was saying after the docs that she has it worse than me! i said to the doc that i didn't think counselling would help as it won't get rid of the pain and he agreed. yes the letter did sound like it was very positive and that he wants to see me in 3 months, i said no way! doc gave me copy of letter and i adjusted the bits that weren't right so i will keep that. the doc does agree with me and wants to do everything he can but i have to go down the right road, he will push pain clinic fast for me and get a different neuro, mum explained it all a bit more to me. i know everyone is in the boat as me and i sound very selfish that i want things done now.  why do people have to go through this, its not right, people with this should have something don right away no one should have to live like this.
    • fed-up
      fed-up colin69485

      Posted

      oh and thats the other thing, mum said i have to stop reading things on the internet, i told her im reading other peoples accounts off this TN real people that go through it and im reading up about treatments. she said go to pain clinic and see what the 'experts' have to say! i said experts? they know nothing, the only experts of this is the people who are going through it. Geez she bloody annoys me and she does it deliberately.
    • Valkyrie
      Valkyrie fed-up

      Posted

      I mentioned to my surgeon that i was with an online support group and he said that was good because it reduces stress which can make the condition worse and also sometimes you can suggest things to a doctor he has not brought up and see what he thinks. I know what she means about reading things on the internet being a problem though. There is a lot of awful rubbish floating around, everything from natural healing with some weird (expensive) stuff from the mud in the Amazon to rubbing yourself with petroleum jelly and setting your hair on fire. That is not what we are about. We are here to swap stories and help each other with information and support.
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