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 Nightmare with Doctors

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PostSubject: Nightmare with Doctors   Tue Jan 08, 2013 11:22 am

Sorry for the long post – I need a rant and any advice from
people who have been through the same!

I was discharged from hospital with acetazolamide, but
suffered badly with side effects (violent sickness, constant nausea, extremely painful
pins and needles all over my body).

At my follow up appointment my consultant changed my
medication to chlorthalidone – this seemed to be working perfectly. Then the
manufacturers stopped supplying it so after lengthy discussion with my
consultant the GP prescribed benzothiadiazide.

I Immediately knew this medication was not working as I was
not peeing as much (sorry for TMI!) I had gone from getting up 3 / 4 times a
night to sleeping through. I could feel pressure building up and my eyesight
was deteriorating significantly. I had another LP last Thursday, thankfully this
time with a Dr who knew what she was doing, needle in first time
J. Pressure is back up
to 31 and she agreed the benzothiadiazide wasn’t strong enough and would
discuss this with my consultant asap and get back to me. 5 days later and I’ve
still heard nothing. My consultants phone goes through to his secretary who is
never there, I’ve left lots of voicemails and my GP can’t give me an
appointment until next week! The Dr who performed my LP advised that if I wasn’t
on the right medication 2 days after having an LP my pressure would be back to
pre LP!

I can feel the pressure building right back up, my eyesight
is going again, and working is becoming a real struggle. I’m struggling with sleep
as being in the dark makes the spots and stars worse.

At my wits end at the moment, as I really don’t feel I’m
being cared for at all. My parents and partner are on the verge of taking me to
a private hospital, but I really don’t feel I should have to pay for something
the NHS should be doing, and quickly as it’s affecting my eyesight so much!
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PostSubject: Re: Nightmare with Doctors   Thu Jan 10, 2013 3:07 pm

Contacts PALS - its the best way to get stuff done. PALS should negotiate for you but if things don't move quickly from there complain. A formal complaint - PALS will be able to give you the complaints procedure.
The only other option is the private one that you mentioned. Having been in a similar position that's what I did. I can't take diamox either. I was really messed about by a hospital - eventually I ended up moving hospitals completely. But to get things moving I payed privately for a consultation with a neurologist. I then went back on his NHS list and had all my treatment back on the NHS. Its very sad to say that its the best £130 I ever spend. In fact a few months later when I was really ill I used the same trick again. He saw me privately but I had my treatment back on the NHS and I was admitted for an LP same day and seen for an MRI within 2 days. Its completely wrong but I'm afraid when you are ill and nobody is listening you feel out of options.

Hope you get on ok with PALS. I found they are very knowledgeable and friendly. Best of luck.
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PostSubject: Re: Nightmare with Doctors   Mon Jan 14, 2013 6:47 pm

I agree..contact PALS! A lot of our treatment seems to be a hurry up and wait approach, but it's bordering on the ridiculous. PALS should be able to help you get back on track..good luck!!!
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