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 Louise - diagnosed March 2012

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Roed
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PostSubject: Louise - diagnosed March 2012   Sat Mar 10, 2012 8:18 pm

Hi everybody.

I am very new at this and being from at very small country(denmark) - nobody knows much about the diagnosis.

I went to my own doctor on monday after having had trouble with my vision for about a week, and he sent me directly to an eye-doctor (sorry - I'm missing som english words). This eye-doctor found absolute nothing - except some swelling on the optic nerve in both eyes. So he sent me straight to a neurologist.

I was fianlly diagnosed this thuesday, after having been sent from specialist to specialist and from test to test. Since they couldn't find anything on my CT and MRI scans I had a Lumbar Puncture done - and my pressure was 42 cm (don't know if that means anything to any of you?)

So here I am. Newly diagnosed with IIH, just starting my treatment with Diamox - and starting to realize that I might never be the same person i was before I was admitted to hospital on monday...

I have had a hard time finding a danish site with a supportsystem - which is why I am here now.
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PostSubject: Re: Louise - diagnosed March 2012   Sat Mar 10, 2012 8:34 pm

Hello Louise and welcome2

Your English is just fine! You did very well describing your problems dealing with IIH.

There are not all that many medical people who know about IIH and how to treat it even here in the US!! It is considered a rare disease.

It sounds like you are under good care now. The "normal" range from a lp for opening pressure is 10 to 20 cm., so yes, 42 is "high". Some docs feel 25 cm should be the maximum for :normal", but actually each person has their own "sweet spot" where the body likes the spinal fluid pressure to be.

Diamox is the usual first drug used to help lower the pressure. Sometimes we have to experiment how much we need to take to get good results. But you are going in the right direction.

Yes, you are not the same person you were before Monday. Now you will be better. Now you will have a better understanding of how your body works, what it needs, and you will have to learn to take care of yourself to get better, and hopefully put the IIh into "remission." Some doctors say that losing weight will help, some say reducing salt and increasing potassium intake. Talk with your doctors and see what they want you to do. I would suggest that you keep a daily log of how you are feeling, what meds you have taken, what symptoms you are dealing with. It will make it easier for your doctors. There are many good forms available here on this website.

I hope that you will start to feel better and be comfortable talking with us. We are a compassionate group here, just wanting to help each other get through this. hug
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PostSubject: Re: Louise - diagnosed March 2012   Sat Mar 10, 2012 8:56 pm

Thank you sooo much for the fast reply, Wylee!

In Denmark 50 people out of a population of about 5,6 milion (TINY compared to the US) is diagnosed every year. So it's very hard finding a specialist... And even harder finding someone with the excact same symptoms...

Thank you soooo much for all the good advice!

And I was comfortable even after my "welcome-email"!
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PostSubject: Re: Louise - diagnosed March 2012   Sat Mar 10, 2012 9:12 pm

Hello Louise hug Welcome to the group and I am so pleased you are here! I can only agree with what Linda/Wylee has said. You are in a better position now because you can talk to other members and read their posts to give you an insight into treatment and how they deal with IIH on a daily basis.

Please dont hesistate to ask as many questions as you want, that's why we're here.

Heidi
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PostSubject: Re: Louise - diagnosed March 2012   Sun Mar 11, 2012 12:00 am

Hi Louise,
Welcome To the group! I'm so glad you found us! We all have trouble finding a doctor who understand us so we know how you feel hug

I hope you start to feel better now that you have started the Diamox, don't hesitate to ask question's and we're always here for support xxx
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PostSubject: Re: Louise - diagnosed March 2012   Sun Mar 11, 2012 1:15 am

Hi Louise! Welcome to the group! Very Happy

I wanted to let you know I was diagnosed over two years ago, and I have done really well on Diamox. Hopefully, it will be the same for you. Please feel free to ask any questions if I can helpful.

I'm glad that you've found this group, because there are so many wonderful people here with so much support and encouragement. We look forward to getting to know you!
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Louise - diagnosed March 2012

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