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 Sally - diagnosed September 2010

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PostSubject: Sally - diagnosed September 2010   Sun Jan 09, 2011 10:40 am

Hi all i just wanted to introduce myself, i'm Sally i'm 40yrs old with 5 sons and a daughter, and am married
. i first got diagnosed with IIH last sept afterl months of being ill and loads of tests, i had never heard of this illness before so was completley in the dark to what to expect from now on,
i'm currently taking diamox (which has given me real bad pins and needles mainly in the feet) which my neurologist has just doubled for me because my headaches were so bad, had a LP last aug loads scans etc, i also get very tired and am currently loosing weight as i was very overweight i have lost 2st since aug as my gp said this might help the condition long way to go yet though,
my opthamologist is great as well as i have pap in one eye from which i began to lose the sight in but thankfully it seems to have improved alot,
i find the hardest thing is that because you cant physically see anything wrong with me people find it hard to accept that i'm ill at all. so feel like i'm alone coping with this as i've stopped telling friends family how i'm feeling anymore. doesn't help that noone heard of this illness either i find lol,
anyway look forward to chatting with everyone its given me hope just finding this site and others just like me

hugs to all x
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PostSubject: Re: Sally - diagnosed September 2010   Sun Jan 09, 2011 7:24 pm

welcome to the group, I know just how you feel, and it makes it harder to live with when people don't understand. I'm so glad that you have doctors that are doing all the right things for you. To help the people close to you to understand is to print of as much information as you can about it, and to give it to them to read, or even point them in this direction, as we have forums for them too, to help them understand how it affects the person they know who has IIH. We do have some helpful printouts and advice in our IIH coping methods section.

I look forward to getting to know you better and I'm always around at some point, so if you want to use the chat-box PM me or email me whenever you want to chat and I can meet you in there. I've had IIH for 22 years now, and so I know how hard it can be, but I also know that you can adapt and have a better life once you are on medication, and aware of what your body can now do with this condition. There is always chance of remission, so please stay positive.
for you
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Sally - diagnosed September 2010

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