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 Tracey - diagnosed 2010

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traceyb
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PostSubject: Tracey - diagnosed 2010   Sun Apr 25, 2010 9:00 pm

hello all
here's my story.....Hope you are sitting comfy this might go on a bit in september 2009 i was diagnosed with Fibromyalgia (dont know if anyone is aware of this condition but one of its symptoms is headaches) when i was diagnosed with this it turned our lives upside down we had never heard of it before. Anyways these headaches were getting worse and unbearable so decided to go to my local optician's to get my eyes checked, yes i needed glasses for close work , he also told me that the pressure behind my right eye was slightly raised (which they told me the same 2yrs ago, and sent me of to the eye hospital) so off i go to the eye hospital ( september 2009) expecting to be told the same as before the pressure is fine no problems we will discharge you...... , yes i was told the pressure was fine in my eyes BUT the optical nerve seem;s to be to small so he was sending me for an MRI scan (the scan date was end of October 2009) .Had my scan ,now waiting for appointment to come through for the results............the 4th of december 2009 i had a telephone call from a neuro's secretary saying that before i go back to see the eye doc i needed to have a MRV scan and a lumber puncture very soon was the words she used..i asked if they had found anything on the MRI as i needed more tests, she said she didnt know she was just passing a message on. any months passed no appointment so telephoned to find out what was happenig the appointment was in the post ..............March 2010..... appointment with eye doc ( still not had the tests) was taken for the normal eye tests then in to see the doc... drops in my eyes,taking a long time to view the back of my eyes.then he sits back and tells me my eye's had deteroated since my last visit in september, he then went on to tell me that i had pressure on the brain (bengin intercranial hypertension) i needed to have more tests and would either be treated by the neuro or my GP......he then said have you got any questions???? ok we will see you in three months....... bye.. ...... i left the hospital knowing nothing at all about this condition had to go home and tell my 4 children, my parents and siblings what the doc had said then go to my auntie's funeral ...

My appointment finally arrived april 2010 (just over a week ago) went to the QE hospital had my MRV scan waiting for results an then to have my LP after waiting around for 5 hours the doc finally came to see me saying they couldnt do my LP as it would be to dangerous as mine brain had slipped... they said they were having a meeting the next morning to discuss my scan to see if it would be safe to have an LP.........the following day i had phone call to go in and have my LP... the doc explained that my brain had slightly slipped down but they thought it was safe to do the LP....4 attempts to do the LP my opening pressure was 36, i felt great for a couple of days NO HEADACHE but it didnt last long the headaches are back wit avengance so now i am waiting to see the neurologist to have my condition officially confirmed and find out what going to happen now ..........
sorry if i have rambled on and sent you all to , after joing a few IIH support groups and fourums i have found that all the symptoms i have fit in well with IIH...
things seem to make a lot of sense now

still trying to come to terms with this all the is greatly appreciated
and a big for listening well reading my story xx
s to all
trace x
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Laura
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PostSubject: Re: Tracey - diagnosed 2010   Sun Apr 25, 2010 9:06 pm

Thank you ever so much for sharing your story Tracey, you have really been through the mill! I'm ever so glad you have joined our forum and I hope you find everything available helpful, please stick around Smile

Laura

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Heidi
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PostSubject: Re: Tracey - diagnosed 2010   Sun Apr 25, 2010 9:19 pm

First of all Tracey to our group, and no need for apology, we're here to listen to you and share our experiences with you, and support you. Alot of us have long stories as unfortunately it's a long and frustrating road getting to a diagnosis. Once there, it seems the doctor forgets to tell us anything about the condition, leaving us with the only option but the internet, and thank goodness for it, otherwise we'd be none the wiser.

You don't mention if they have put you on Diamox or anything, is that because they haven't made a determinate diagnosis because of your brain slipping. Which sounds like Chiari, please see more information on this in the Recommendations section under Informational Links. Some symptoms of Chiari do factor in IIH. One of our members Charlie, has Chiari and like you, her diagnosis wasn't straight forward. I'm sure she would welcome any questions you will have.

We are always here for you, whether it be to have a rant, ask any questions, advice or even if it's just to share a joke or two. Talking about what you're going through can really help, and here we aim to keep you as well informed as we can, as well as give you the support and the strategies to have a better life with this condition.

Thank you so much for joining
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PostSubject: Re: Tracey - diagnosed 2010   Sun Apr 25, 2010 10:24 pm

Hi Tracey,

I empathize in your plight. I experienced the same during my initial diagnosis. Doctors can't figure it out and they still doubt if it’s IIH. I guess it’s because IIH is rare on men and only a few cases had been diagnosed in the country where I've been. I too have a share of mishaps during LPs and you might read my posts about it.

I hope you will figure out with your doctor the right treatment for you. You can also browse through out topics here to have a more in depth idea of the treatments for IIH. It takes a lot of time and patience to cope with the condition we have. So feel free to post your experiences and comment on other’s post.

Have a blessed day and my prayers to Allah are always with you.

Saleh
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traceyb
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PostSubject: Tracey's Introduction   Mon Apr 26, 2010 9:07 am

Hi ty u all for the warm welcome
I have not been given any medication for BIH, i do take a lot of medication for my Fibro .....Co-codamol,tramadol,ibruffen, ratadine( for heatburn),amtriplyne,and fusomide(water tabs as my ankles,leg,arms ect were swelling ).... (please excuse my spelling )my brain aint working today again nothing new there :-) I havent been told an ything about my brain slipping no explanation as to why it has happened just somthing else for me to worry about they did say that its possible it's been like it all my life if so why didnt they pick it up when i had an MRi scan about 15yrs ago an surley i would have had some sort of symptoms from it if there are any ..
I forgot to mention i went to my optician's saturday for eye test as i felt my eyes had change since my last visit six months ago.... and my long vision is fine but my short vision has got worse in six months so had to have new lenses....
I do seem to be having a lot of visual problems, floaty bits, blurry vision,double vision,also i get like a greying over my eyes and thing sort of vanish from my side view dont know if this happens to anyone else

trace x
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