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Thread: Long time no see! :)

  1. #31
    Head Groundskeeper OldMike's Avatar
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    Nothing goes smoothly does it hopefully this Movement Disorder Guy can sort something out when you get transferred, I'm glad you're hanging in there.
    77 and counting, less of the "Old" call me "Mike"

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    Techie (30-11-19)

  3. #32
    Princess Sparkles Paula's Avatar
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    How do you feel about the transfer?
    The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.

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    Techie (30-11-19)

  5. #33
    Boss Lady ;) Suzi's Avatar
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    I hate transferring from one to another, it always seems to take time to catch up in the system!
    Hope that the new person is more specialised to help...
    Do a little of something that makes you happy every day!


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    Techie (30-11-19)

  7. #34
    Thankyou, guys.

    Honestly, I have mixed feelings about it. On the positive side, I think that the advice/treatment/opinion I get might be more tailored to whats going on with me, given the last guy is more of a peripheral nerve specialist than a movement disorder specialist. On the negative side, I do feel a bit let down that the first guys secretary didnt follow through. Also, this new guy isnt a full consultant - he actually works as a gp as well - where as the last guy is the vice chair of the royal college of physicians in Wales, so in a sense it feels like a step down. I have talked to someone he's treated though (the new guy) and hes a good man apparently, so thats good. I just hope that I don't end up minimising the condition, which I do sometimes, I think its a bit of a confidence thing. I'm also expecting there to be a bit of recrimination because I didnt finish the trial of dopamine, but there shouldnt be - I can't take something that I find useless or deleterious just because a doctor has told me to. So, Im gearing up to be a little defensive about that maybe, hopefully it wont be necessary though.

    So yes - mixed feelings, but, in spite of the negativity (real or imagined) I still think its the best chance I have right now of getting somewhere with all of this. I will keep you guys updated with how things develop, and I'll speak to you soon.

    Cheers, guys and I hope everyone is doing well today.

    T

  8. #35
    Princess Sparkles Paula's Avatar
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    If you’re worried that you’ll minimise the condition, perhaps you should write everything down to take with you?
    The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.

  9. #36
    Boss Lady ;) Suzi's Avatar
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    I agree, and take someone who knows you and the effects it has on your life with you...
    Do a little of something that makes you happy every day!


  10. #37
    Well, what a time Ive had over the last week! Basically, I found out that the second neurologist referred me to a third neurologist who has organised some botox for me (not sure when it is, can't remember if Ive covered this bit, lol). So, I rang the third neurologist's secretary and she said that thats all arranged, but that if I wanted to see the neuro first (I do) then its a 20 week wait for the consultation (by which time I may have had the botox). So, I decided to go private to see the neuro, got all of that arranged. And then, all of a sudden, last week hes made an NHS appointment for me for this coming Tuesday! Which is great, so I should find some stuff out without having to pay for it, which is cool.

    Also, I went to a podiatrist this week and they put more wedges in my shoes (been through this rigmarole more than once), which made things worse so Ive taken them out and am seeing her again in about 6 weeks.

    I am nervous about seeing the new neurologist. I do write everything down for them as standard, in case I forget anything or my nerve doesnt hold about certain details and I end up minimising, so there is no problem there - I think its just anxiety. I think as well that its a case of Ive been to this doctor and that one and surgeons and none of them have done anything, so Im a bit anxious that its going to be more of the same. I feel its up to me to get something out of these people, rather than them providing a service, in a way, and I don't like that feeling. However, whether thats just a feeling I have or whether its the way the system works, I don't really know at this point.

    Anyway! So its been fairly hectic - hopefully some good will come out of it. I hope everyone is doing well, and I shall let you know how it all goes.

    Cheers

    T

  11. #38
    Boss Lady ;) Suzi's Avatar
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    Wow! That is busy! Why didn't neuro 2 see you?

    Make sure you pop on and let us know how you get on? I hope it goes really well!
    Do a little of something that makes you happy every day!


  12. #39
    Thankyou, hon.

    Neuro 2 just arranged the botox from what I can tell, lol - why neuro 1 or 3 couldnt have done that, I don't know. The thing about neuro 2 is, hes not a full consultant, though he is still a member of Neuro 1's team, I think. I don't know, all gets very confusing very quickly, lol.

    I will indeed let you guys know how it goes. Cheers.

    T

  13. #40
    Head Groundskeeper OldMike's Avatar
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    What with neuro 1, 2 & 3 it does get a bit confusing and as neuro 2 is on neuro 1's team perhaps he should be called neuro 1a Well I hope the Botox helps, it shouldn't be up to you to push these neuro's in a particular direction it should be them taking the lead as they should know more about such stuff.
    77 and counting, less of the "Old" call me "Mike"

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