Neurology Results

[KICKSTART]

Had my appt on friday and straight away the specialist knew what was wrong ! After months of being given the run around by everyone else. He did give it a very long medical name..but who cares i cant remeber it ..im not going mad! The way he described it was thats it was a disintegration of my neck bones , hence the like crunching sound when i move my neck (but not everyday) this in turn is aggravating the nerves in my neck which lead up over my head to above my left eye, which is where the pain is unbearable . So my clever Neph who would not refer me to anyone and said there was no way that pain in my neck would affect my eye ..its 2 fingers up to you ! In the long term nothing can be done but the neurologist has given me ..Amiltriptyline to help with the pain and suggested indian head massages to help as well ..great except for no one in my area does them and its very expensive as he suggested i go at least once a week ! Also the Amiltriptyline is as bad as it sounds ..like one bad trip! It has doped me up beyond belief and for the first hour in the morning when i get up i cant even walk in a straight line! As for the dialysis staff , i reported my appt back to them and they are still not interested in helping me out by putting me in that little room ...i hoped they would now take it seriously ..fat chance As for my neph ..well hes a total waste of space ..honestly ..i hate him , hes everything you wouldnt want in a Neph the only problem being i dont have the choice of anyone else.

[MooseMom]

Did you post a topic on this before, or am I hallucinating?  I think I remember posting that when my son was very young (he has high-functioning autism), I took him once a month to a cranial osteopath, and that seemed to really help him.  I know that such things aren't available on the NHS, but it may be worth investing in head massage once or twice and see if it is helpful.  How about accupuncture?  I think I'd rather spend the money than be in chronic pain or all doped up.  Why exactly is the dialysis staff so unhelpful?  Why can't they put you in that little room?  That seems just so stupid and arrogant.  I'd keep pressing them to do that for you...it seems such a small thing.  If you can find out why they can't accomodate you, perhaps you can offer a helpful suggestion that doesn't involve two fingers (or even one).

I'm so sorry you are in such pain; it must make life so much harder.  I'm very interested in how you end up tackling this problem, so please keep us informed, OK?  I hope you find something that helps.

[jbeany]

Get the specialist to send copies of his results to the neph.  See it the specialist will write a scrip for the dark room - it might help to have it in writing from any doc, even if he doesn't run the D center.  Every week massages sound horribly expensive, but I'd give at least one a try.  Maybe you could figure out some of the motions that you could do to yourself, or at least have a friend try to replicate.

Glad you have an answer, though. There's nothing more annoying than unexplained symptoms!

[okarol]

I am glad you finally got an answer that makes sense. I agree, get the Neuro to prescribe quiet and darkness to help get you through your dialysis treatments. Sorry you've got to deal with this KS. 

[thegrammalady]

glad to hear you finally got an answer. and none of us ever thought you were crazy.

[Rerun]

I like Jbeany's idea of a Rx from your new found neourologist for a dark room.  Then right before dialysis, take one of your new pills and sleep through it. 

I'm glad you are making some progress.

                   

[KICKSTART]

When i first started on the road to find out what was wrong with me i saw 3 different eye specialists , 2 of who said they would write to my neph to recommend i stay out of the strong light but its not been of any use. The beds are allocated by the renal staff and none of them take my problem seriously ( i am not one of their favourites!) But the way they get round not putting me in the little room is by saying it needs to be for people who are ill or have infections ...ok i can live with that. But just to prove a point over 2 weeks i went to everyone in that room and asked them (in a caring way) if they were ill or not so well and NOT ONE of them was ill. I mentioned this to a nurse , who said ..well maybe they didnt know they were ill , which basically means they didnt complain they were ill because they didnt know , so didnt mention it to a nurse , which means the nurses have now got ESP and can tell when someone is ill but wont tell them ..if you get my drift. But time and time again to cover themselves they use this excuse not to follow the doctors orders and my neph is a waste of time he told me i couldnt possibly have pain the travelled from my neck to the point over my eye.

[MooseMom]

I think the renal staff are a bit power-hungry and are just being obstinate for the hell of it.  I don't know what to do about such people.  Don't doctors in the UK talk to each other?  Can your neurologist talk to your neph?  Really, this is just outrageous and supremely pointless.

[Romona]

I am sorry you are in such pain. I hope you find relief soon.

[Poppylicious]

What a relief it must be that someone has finally given you a name for the pain and suggestions/medication for easing it.  It's just a shame that your neph and nurses are being silly.  Tsk.

As for the Indian head massage ... don't further education colleges sometimes need volunteers (or offer very reduced rates) if you're willing to be used as a guinea pig for students?  Could you enquire at your local one?  Or maybe ask at the local library.  There may be a volunteer organisation nearby that might be able to help.  At the very least pay the full price for a couple of sessions to see if it benefits you.