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 Diagnosed in April 2014

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Roisin
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PostSubject: Diagnosed in April 2014   Thu Oct 02, 2014 5:20 pm

I have recently been diagnosed with IIH. Finding it really hard to understand the amount of time I have to wait to see my neurologist. Only seen him once since April and my next appointment is not until end of November. I have had 6 LPs since April with very high opening pressures. Things just seem to be getting worse regardless of the medication I am given. I feel like im the only one suffering and no one else understands
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PostSubject: Re: Diagnosed in April 2014   Thu Oct 02, 2014 9:27 pm

Hi!  Welcome to the group.  We're so glad you found us, and I'm so sorry to hear about the difficulty you're having with getting treatment.  I'm not sure how it works in your country, but have you been able to communicate with the neurologist's office and let them know the medication is not helping you?  What kind of symptoms are you having?  If you're having anything related to your vision, it's very important to let them know, as they usually want to take action quickly to get your pressure under control so there's no permanent damage to your vision.  Maybe someone from your area can be more helpful on specifics of how to get your appointment moved up.  You're not alone with IIH!  We all know how frustrating it can be.  Hope you're able to get better access to your doctors!
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PostSubject: Re: Diagnosed in April 2014   Thu Oct 02, 2014 10:25 pm

Hi, and welcome to the group!!! I'm also sorry to hear you've been so neglected. It would help us to have more information like your symptoms, medications, etc. IIH can be very difficult to treat, so a very long and frustrating process for a lot of us.

Is there an ophthalmologist or physician you've seen that would advocate on your behalf? It looks like you could contact NHS or Scotland Patients Association to discuss your concerns regarding care. I also don't know much about the healthcare system in your area, but maybe one of these agencies could advise you.

Look over the site and let us know if you have any questions or concerns. We'll do our best to help you through this difficult time!

Take care,
Julie
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PostSubject: Re: Diagnosed in April 2014   Fri Oct 03, 2014 12:37 pm

Hi Ladies, sorry for the late reply, wont let me reply on my mobile for some reason. I was prescribed Diamox in June but the pains I was having in my hands and feet were too much to bare. My eyes were very dry, muscles were aching and I constantly felt very tired. I was taken off them and put on Furosemide, and if anything the time between LPs are getting shorter. I was going for almost 5/6 weeks before needing another LP, now I'm lucky if I get 4. The last 2 were 2 weeks apart with pressures between 35 and 41. I'm having really severe head aches, worse when leaning forward and back. Eyes are sore to light, buzzing in my ears, tiredness, very agitated. I have son who is nearly 20 months old. Sometimes I cant even get out of bed, resulting in my partner having to take time off work to help out. I'm also very near disciplinary action in work for the amount of time I have taken off because I refuse to get a sick note. This whole horrible illness is taking over my life and I just don't seem to see light at the end of the tunnel. The amount of time I have to wait to see my doctor is ridiculous. I have called time after time and explained that I am having more frequent LPs, but that doesn't seem to hurry anything along for me at all... Any suggestions ???? Thank you
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PostSubject: Re: Diagnosed in April 2014   Mon Oct 06, 2014 5:49 pm

Check with Citizens Advice Bureau for guidelines on Statutory Sick Pay and other benefits. Maybe they could also advise you on how to get appropriate treatment. I previously mentioned NHS and Scotland Patients Association, but you'll have to look into them and decide which will best meet your needs.

Good luck!
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Diagnosed in April 2014

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