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 Gina - diagnosed Feb.March 2011

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ginapink
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ginapink


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PostSubject: Gina - diagnosed Feb.March 2011   Gina - diagnosed Feb.March 2011 I_icon_minitimeFri Mar 25, 2011 11:43 pm

Hello there, my name is Gina, and I have IIH. I have been recently diagnosed, but have been telling my doctors for over a year that this is what I have. They finally decided to listen to me. Gina - diagnosed Feb.March 2011 798403 I guess I'm what is considered the "typical" patient... Female, 42, overweight, no apparent cause. But I have been having the strangest of reactions because of this, and also because of the meds they've put me on. I seem to be getting the "rare" side effects from the meds, and even some that no one has ever heard of before. That seems to be me. My goal in joining this group is to get support and information from other patients and caregivers/friends about what they've experienced because of this disorder. I have about a hundred questions that my doctors just can't answer because they've never been personally involved/affected by this disorder. I've gotten lots of "medical" info, but nothing personal, and I have no one to talk with about this. I hope I've found a place for coping and answers and friendship.
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Heidi
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PostSubject: Re: Gina - diagnosed Feb.March 2011   Gina - diagnosed Feb.March 2011 I_icon_minitimeSat Mar 26, 2011 12:51 am

Hello Gina and a very warm Gina - diagnosed Feb.March 2011 996753 you have indeed come to the right place. you have definitely been on a bit of a rollercoaster and no wonder your Gina - diagnosed Feb.March 2011 978963 off. Unfortunately we all seem to have the same experience which considering all the information there now is, you'd think you'd want to go through all this. PErhaps they should have IIH doctor workshops so they can at least all be informed.

Feel free to ask as many questions as you need to, hopefully we can as many of them as we can, and get answers to some we might not, for you. We have lots of information in the Informational links section, as well as some guidesheets and helpful coping methods, that have been created based on experience.

We have also contacted Working With chronic Illnesses Inc, and they are happy to help IIH sufferers with free legal and insurance information and assistance. They don't just deal with people who are employed they deal with a lot of issues that sufferers have a hard time with such:

• How to get your own medical records.
• How to get and keep health insurance.
• How to get health insurance coverage for particular treatments, drugs, and/or therapies.
• How to get private disability insurance coverage.
• How to get Social Security Disability Income.
• How to assert your rights under the Americans with Disabilities Act.
• How to assert your rights under the Family and Medical Leave Act.
• How to ensure that schools accommodate students with chronic illnesses.

Advocacy for Patients with Chronic Illness, Inc.


We are part of the IH Brain Pain Team and also in partnership with the Brain and Spine Foundation. So hopefully we have lots to offer, to help you have a better time of it with IIH. Gina - diagnosed Feb.March 2011 539880
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http://www.ihaveiih.com
shivang
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PostSubject: Re: Gina - diagnosed Feb.March 2011   Gina - diagnosed Feb.March 2011 I_icon_minitimeWed Sep 07, 2011 4:30 pm

Hi Gina very sorry to know what u r going thru and I wish u get back to normal asap.... Well my wife has been facing the same problem since May'11 she has lost her peripheral vision and the doctors have stopped any further meds saying that she cant improve anymore....

can u plz tell me what is ur condition now and what treatment u r going under....??????

many thanx
Shivang
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Milliejet1980
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PostSubject: Re: Gina - diagnosed Feb.March 2011   Gina - diagnosed Feb.March 2011 I_icon_minitimeThu Sep 08, 2011 11:20 am

Hello

and welcome, I've recently Joined this group and find it nice and relaxed :-) xx hope to catch up with you soon xxx
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PostSubject: Re: Gina - diagnosed Feb.March 2011   Gina - diagnosed Feb.March 2011 I_icon_minitime

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