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 Ana - Diagnosed August 2012

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PostSubject: Ana - Diagnosed August 2012   Sat Aug 18, 2012 9:36 pm

It's been three long years of being tossed from doctor to doctor. I've been to the doctor's about 15 times in the past few months alone, and I've given them enough of my bodily fluids to make a whole new person. No one really believed anything was wrong with me at first - how could they, when every blood test produced normal results? It wasn't until just this summer that the doctors finally heard me out and agreed that something was, indeed, wrong.

Technically it started with fatigue and dizzy spells, but it wasn't until this year that things started to get bad. Over time, I started to struggle with my memory and concentration. I was involuntarily falling asleep in class, I couldn't keep track of my assignments without a planner. But I kept strong and fought on. My grades were the center of my world, and nothing was going to stop me from getting what I wanted - acceptance to a good college. In the winter, though, I began to notice unusual changes in my vision - I saw shimmering clouds and little sparkles everywhere. Parents took me to an ophthalmologist, but as far as he could see, everything was, yet again, "normal." He suggested that I was struggling with eye migraines, recommended I drink coffee when they bothered me, and went on his way.

Last April, the vision changes became worse. I was walking to class one day when I noticed that the grass on either side of me was blurred in one spot. Puzzled, I stopped to investigate. I moved my hand into the area, and it became blurry too. And when I closed my eyes to look at it, my hand was just gone. This made me panic. I'd heard blind spots were a common complaint for migraine sufferers and started panicking, thinking that I was on the verge of having a real, full-blown migraine for the first time (if only it were that simple!) I went home and was rushed to the ER. MRI, CT scan. Normal. Doctor noticed inflammation in my sinuses, sent me to an ENT. Still normal. Went back to the ophthalmologist and, surprise surprise, I have papilledema. One more MRI was done, and then I was sent off to the neurologist. I had my spinal tap last Tuesday and my follow-up yesterday, and now here I am. Gonna start my first dose of Diamox tonight.

So that's my story. I'm really not sure how to feel about all this. I'm relieved, on the one hand, to know that I'm going to be okay more or less. I don't have cancer!!! But I'm still afraid. This is my Senior year of high school - and as much as I'd like to resist and say that this stupid disease isn't going to get in my way of success, I don't know if that's true. I don't know what to expect, how long this will take to improve if it does, how many more of those terrifying spinal taps they're going to want from me. On the plus side, my opening pressure was only 24.5, which is quite low for someone with this condition though still too high to be considered normal. The neurologist thinks that because of this, it will take less time to get me back to a normal level. I just wish there were a way to do it now, right away, and make it stay that way forever. But I suppose wishful thinking isn't going to get me anywhere. I do have IIH, and I do have to deal with it. So I figured the best thing I can do for myself is find a circle of people going through the same thing to connect with, and I did. I will continue to share my experiences as I go along and offer advice when I can. I just wanted to say that I think all of you are incredibly brave, and I wish you all the best. I'm lucky to have the disease in a milder form, and I can't even begin to imagine what kind of pain it must be to have your pressure above 27 or even 30, if this is what 24.5 feels like. :shock:

So I suppose I'll see you guys around. Stay strong. hug



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PostSubject: Re: Ana - Diagnosed August 2012   Sun Aug 19, 2012 6:25 am

Hi Ana! welcome

Bless your heart! hug You have really been through the ringer trying to find out what was going on with you....

You have found a great resource in this site with super friendly people who are going through the same physical symptoms you are.

I discovered this site a few months ago; I am a newer member. The support and information are very helpful and it is comforting to know others are going through it with you. If you have questions, don't be afraid to post and ask. Chances are, someone here has gone through it or is going through it!
:flower: :flower: :flower:
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PostSubject: Re: Ana - Diagnosed August 2012   Mon Aug 20, 2012 7:56 pm

Hi Ana, and welcome to the group!!! I'm so glad to hear they finally were able to diagnose you and start treatment..hopefully, you'll find relief soon! I suggest you start a symptom/medication log, so you can track what's happening. It will help you keep things straight and make conversations w/ your doctor a lot easier. There are examples in the USEFUL GUIDES AND PRINT OUTS section.

I also just wanted to mention that everyone's "normal" is different, so try not to get hung up on the numbers. If you're having symptoms and your vision is affected, it's serious. I guess I'm just saying don't let anyone diminish your pain or suffering because you don't look sick or your numbers aren't where they want them to be. If you're having symptoms, you need to keep pushing..even the experts can be wrong. It sounds like you've been through enough to already have figured that out.

Look through the site and let us know if you have any questions. You can post new topics or responses throughout the site. And, please PM me or any of the other Admin or Moderators with any questions or concerns. We'll do our best to help you through it. I hope you find relief soon!

Take care,
hug
Julie

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PostSubject: Re: Ana - Diagnosed August 2012   Mon Aug 20, 2012 9:25 pm

Hi Ana and a very warm welcome to the group. hug What a horrible time you've had before finally getting a diagnosis and treatment. I know at the moment you feel like everything is spiralling out of control and your life will never be yours again, but I can assure you it will be. Once your body adjusts to the medication and stabilises, you can start to get back into the swing of things again.

At the moment you have to adapt the way you do things to what your body can cope with now, so that it doesn't aggravate your symptoms. It can be done but it's trial and error at first. This is why we encourage you to keep logs, such as a medication log so you can make a note of how you are doing with your medication, a symptom log so that you can keep a record of what's going on. These not only help you, but they give your Doctors a exact information on how you have been progressing since they last saw you. This way you cover everything.

We have lots of information and helpful booklets, and we are all here to help and support you. If you even want to have a rant, you can even do so in group huddle. Don't give up hope or even feel that things are no longer possible for you, because they are. It just means that you have to approach doing them a little differently than you would have previously.

Heidi
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PostSubject: Re: Ana - Diagnosed August 2012   Mon Aug 20, 2012 11:40 pm

Hi Ana and welcome2

The others have given great advice. Please do try to keep those logs. It will become an easy habit to keep.

We have learned that there really is no such thing as a "normal" zone for CSF pressure. It really depends on what your body considers that normal needs to be. As an example, my opening pressures have been between 22 and 24, but after having testing done, it seems my "normal" is closer to 10. That's HUGE! But, each person is different, and the important thing is having a doc that is willing to think that way.

I hope that you are able to get your IIH under control very soon and be back to doing all that stuff that seniors have to do to go on to college or start a career or just have fun!! Looking forward to chatting with you again.
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PostSubject: Re: Ana - Diagnosed August 2012   Thu Aug 23, 2012 10:59 am

Hi Ana! Smile Welcome to the group! I'm sorry I'm so late in responding here, but very glad you've found us, and hope that you'll find lots of great support and info here.

I can relate to the feeling you have of being relieved nothing is "seriously" wrong such as a tumor, but at the same time realizing you have this life-changing condition now to manage. It's very overwhelming at first. But it's great that you have a positive attitude about things and a persistence to get the treatment you need. Those two aspects of your personality will serve you really well in dealing with IIH as you go forward.

I've had it since November 2009. I have not had any surgeries, and I maintain with medication, am able to work, etc. So it is possible to get back to a normal life. *stay strong* and keep us posted on how you are doing! Very Happy
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PostSubject: Re: Ana - Diagnosed August 2012   Fri Aug 24, 2012 12:48 pm

massive hugs xx


Dyslexic & Special

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PostSubject: Re: Ana - Diagnosed August 2012   Mon Aug 27, 2012 5:10 am

Thank you so much for the responses, it is enormously comforting to see that others understand exactly what I'm going through. hug

I will definitely keep a symptom log and medication log to keep track of how I'm feeling. It'll help me to recognize what different things mean and become more aware of my body, I think, so that should be helpful. It also didn't occur to me that 24.5 might be high for me - I forgot that 20 is only the maximum level for a normal pressure, meaning pressures below it can be normal too. For all I know my normal could be 14. But the and opthalmologist I've been seeing seem to know what they're talking about, and both of them have been adamant about getting the tests done quickly and getting me on the right track toward recovery. I have them to thank for that. I've heard so many people complain of going undiagnosed for years simply because their doctors knew little of the disease. Being in that position has to be awful.

Anyway, I'm rambling now, but thanks again. Hope to see you guys around, and I'll check in to let you know of any successes or rant when a rant is needed. Ciao! :hello:



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PostSubject: Re: Ana - Diagnosed August 2012   Mon Aug 27, 2012 5:24 am

Ana, please do keep in touch. We frequently get new members that are your age and it benefits them to hear how someone else has managed dealing with IIH. Especially when having college to look forward to, the timing just couldn't be more wrong!!
I hope your docs get your symptoms under control quickly, and you can indeed get on with your college life.
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PostSubject: Re: Ana - Diagnosed August 2012   Mon Apr 15, 2013 11:05 pm

Ana, how are you doing? Have you been able to complete your schooling? How is your eyesight?
Please drop us a line when you can.
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