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 Danielle diagnosed OCt/November 2011

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PostSubject: Danielle diagnosed OCt/November 2011   Tue Dec 04, 2012 4:24 am

hello everyone.

My name is Danelle in 26 and a mother of 2. I was diagnosed in oct/nov of 2011 and it has been a very long hard lonely road. I have always had unexplained headaches and pressure but no doc did anything for me. I went in for an eye exam in 2010 and the doc told me I had glocoma and said it was nothing to worry about. When it was time to get examed again by another doc he told me to be seen a.s.a.p by my doc to be seen by a neurologist . my first appoitment with my neurologist (dr. ford) I was send for a day long worth of test and we given diamox. She called the next and told me it was psudotumer and I need to have a few move test done and stay on the diamox. I had been taken the diamox for a few months and the side effects suck!!! I was tired of being tired so i took myself off and because I no longer have medical I can no longer see a neurologist and get a refill. My family doesn't know how it is live with the pain. My husband thinks it something I made up and that its not as bad as I say it is( i guess crying doesn't make him a believer). I feel like my eyes are getting worst and I think they are the reason I back my (new) can into another car a few weeks ago. Im grateful to find this website and other people who understand my stress.

If I missed anything or would like to know anything else feel free to ask!!!
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PostSubject: Re: Danielle diagnosed OCt/November 2011   Tue Dec 04, 2012 6:39 pm

Hi Danelle, welcome to the group! I'm glad you found us and hope that you will find that you are not alone. Diagnosis and treatment are difficult, so it is a very frustrating and lonely process. It's really difficult for people to understand, if they haven't experienced it themselves. A lot of times we "don't look sick", which just adds to their disbelief. I would encourage you to have your husband join the site or at least review the materials from Useful Guides and Print Outs section. You may also want to include him in testing and appointments..it will give him a better idea of what you go through and an opportunity to hear it from a physician, which tends to give things a little more credibility.

Diamox can be tough, but some members report side effects became more manageable over time. There are other medications available, so I would make sure you discuss options with your physician. If you're having visual disturbances, you really can't let the IIH go untreated. I would encourage you to follow up with ophthalmologist and/or neurologist asap.

Check out the site and let us know if you have any questions or concerns..we'll do our best to help you through the process!

Take care,

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PostSubject: Re: Danielle diagnosed OCt/November 2011   Wed Dec 05, 2012 4:10 am

Hello Danelle, and

I hope that you will be able to get some asistance soon for your medical care. Having PTC (IIH) can be life altering, including running the risk of losing your vision. It is not something to fool around with, so please do all that you can to get back into the medical system and get feeling better soon.
Diamox does have the potential to make you tired, but, as Julie said, our body's tend to adjust to it, but it takes time. In the meantime it may help to keep your pressure down. You will see that so many of us have had the same issues with meds, trying different ones and combos of meds, trying to find what will work in our individual situation. That can get expensive, but docs often have free samples they can give out to help save some $. Some docs feel that losing weight may help, and that is something you can try too, but, the other stuff, like having a lp to reduce pressure can get very pricey.
Just remember that you are not alone in all this. We understand all too well. We will try to help you along and get you feeling better.
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Danielle diagnosed OCt/November 2011

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