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 Jenn- Diagnosed April 14th 2012

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acerousme
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PostSubject: Jenn- Diagnosed April 14th 2012   Mon Jun 25, 2012 12:40 am

Hi there! Im so glad I found this site!

I was diagnosed with IIH on the 14th of April. And what a ride it has been. I'm not going to go into my whole story, as it is a long one. But everyday with IIH is different, As it stands, I have more bad days than good.

My neurologist has dropped off the face of the earth, and every other doctor that isnt a neurologist refuses to touch my meds..which I am allergic to.

I saw my opthamilogist. I have some damage to my optic nerves but its minimal, so thats a plus...

Im just feeling frustrated, and in need of advice, and support. From people that know what it is like to live with this.

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PostSubject: Re: Jenn- Diagnosed April 14th 2012   Mon Jun 25, 2012 1:11 am

Hi Jenn and a very warm welcome to the group. hug I've a feeling your story isn't a million miles away from all our experiences so far. You don't say where you are from, but have you thought of finding a new Neurologist. You need to be monitored especially with your medication with you been allergic to it. A lot of IIH'ers find they are allergic to the sulpha in the medication so you aren't alone.

It isn't good that you are being left to fend for yourself, because your IIH is going unchecked and uncontrolled.It is good that the damage to your optic nerves are minimal, but for the longterm you need a good experienced Neurologist who can put you on a definite and more suitable treatment plan.

We have lots of information and helpful booklets and we encourage our members to keep a symptom and medication log, because when you see your Doctors you can give them a full picture of what has been happening to you since you last saw him/her.

We are always here to answer any questions and concerns as well as to give you full support and help where ever we can.

Heidi
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PostSubject: Re: Jenn- Diagnosed April 14th 2012   Mon Jun 25, 2012 3:29 am

Welcome to the group Jenn! Diagnosis & treatment can be such a struggle, but you're definitely not alone. Post any questions or concerns & we'll do our best to help. I'd definitely see if your opthalmologist or primary care physician could find you a new neurologist..you have to protect your vision & the right med combo is the best way to start.

Good luck, & keep us posted!
Julie
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Wylee
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PostSubject: Re: Jenn- Diagnosed April 14th 2012   Mon Jun 25, 2012 3:36 am

Hi Jenn and Welcome

We do have other members from Canada here. If you would like to sharre what part we may be able to help you find a doc who has worked well with others.

Do try to keep your pain levels under control. Chronic pain is not good. It can actually get hardwired into your brain so that it can feel pain even when there is no need to.

Feel free to come by for a chat, or a rant. We'll try to help you figure this mess out.
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acerousme
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PostSubject: Re: Jenn- Diagnosed April 14th 2012   Mon Jun 25, 2012 3:59 am

Thanks everyone! I started my own little "rant" already...Im so glad to have found this site! Its nice to have people that understand what I am going through. Makes me feel a little more normal lol


The children almost broken by the world become the adults most likely to change it
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PostSubject: Re: Jenn- Diagnosed April 14th 2012   Mon Jun 25, 2012 5:22 am

Jenn;
if you know you are allergic to the Diamox, you should not be taking it! Sulfa allergy can cause something called Stevens Johnson syndrome which can basically make your skin peel off and can be life threatening. please call your doctor in the morning and ask about this! I think Lasix is in the same family so I don't know if you should try Lasix if you are reacting to Diamox. I would go see an allergist. but every day you take Diamox you put yourself more at risk IF you are allergic to it and having symptoms.
Deb
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PostSubject: Re: Jenn- Diagnosed April 14th 2012   Tue Jun 26, 2012 8:43 pm

Hi Jenn! Very Happy Welcome to the group! So glad you have found us, and please feel free to "rant" all you like. We've all been there and that's what we're here for. *hugs*

I agree with what others have already advised you ... it's so important to be monitored by a good neuro when you have this condition, and it just makes so sense at all for them to have you on a medication you are allergic to! :shock: I hope you will continue to try to get a doctor who will help you. I know it's tough to be persistent when you are in pain, but you have to do it, sweetie. *hugs*
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