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 Hello I'm McKenna

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ToxicPunkin
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PostSubject: Hello I'm McKenna   Tue Dec 23, 2014 10:39 pm

Hello everyone, My name is McKenna and I live in Texas. I was diagnosed with IIH in September. The neurologist said it so casually that I thought it was a common thing. He said I would need a lumbar puncture and to lose weight and it will go away. He put me on diamox and said I will only need to take it for six months. I started researching online and got scared, so I went to a new neurologist for a second opinion. There I was told my case isn't so bad and if I lose weight and treat my sleep apnea it will go away. I don't have sleep apnea and I have lost 30 lbs in 3 months. My symptoms are getting worse. I have had 2 lumbar punctures, a CT scan, and an MRI. I have blind spots and loss of part of my peripheral vision. Also, I have lost some feeling in my feet and hands with tingling all the time. I am not sure if it is related but I have had constant runny nose and several coughs since symptoms began before diagnosis. I can rarely smell anything and I have problems with my ears and balance. I am so greatful to have found this site!!!! I need advice, is it inappropriate to ask my neurologist how many people with this condition he has treated? I don't have much confidence when everyone keeps telling me it will majically go away with this or that. Some people on here have had it for several years and had huge issues. Also, how often do I need to see an opthamologist? neither doctor has even suggested another visit. I went once before diagnosis and they found papilladema and reffered me to the first neurologist.
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Wylee
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PostSubject: Re: Hello I'm McKenna   Wed Dec 24, 2014 12:17 am

Hello McKenna and welcome to the forum.  As you read around the site I think you will notice how similar your story is to others.  What I find especially bad in your case is the poor treatment you have received by not just one but TWO docs.  Good Grief!!
I highly recommend you seeing an Ophthalmologist, perhaps a Neuro-Ophthal. would be better if you can.  You need a good doc who will be in your corner and not just dismiss you.  They are putting your vision at risk.
The tingling that you feel in your hands and feet are probably caused by the Diamox, it's a very common side effect.  If you can, try to keep taking the Diamox because it should help keep your pressure lower.  Did they happen to tell you the readings of your lp's?  You may want to request a copy of all of your medical records so that you can have them to show another doc.  I do hate to suggest it, but, you need to find another doc.  And yes, you have every right to ask how many patients with IIH the doc has seen and how many they have successfully treated too!  You may want to keep good notes on your journey.  Include what docs you have seen and when, what the results are, what the next step is.
Feel free to ask any questions you may have.  We'll do our best to help.
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ToxicPunkin
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PostSubject: Re: Hello I'm McKenna   Wed Dec 24, 2014 2:22 am

Thank you for welcoming me. I think the radiologist took the pressure wrong on the first LP, opening was 28 and closing was 6. On the second I had a different radiologist and opening was 41 closing 14. My vision was worse before the first as far as everything going dark but headaches weren't as bad. Now I see flashes of light and I have to try to focus so things don't get blurry. Also, I see a light shadow around objects and I'm not sure whst that is. The headaches are worse and no medicine relieves them. So maybe pressure is increasing but I had symptoms for 8 months before diagnosis. I am still new to all of this and noone ever told me that going blind was possible. But after reading some stories I need a new doc, one that will prepare me for worse case senario. Not feed me sunshine and roses about it magically going away in a few months. Thank you for your help and I will keep reading everyone's stories they are very helpful!!! Especially about foods and triggers.
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Wylee
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PostSubject: Re: Hello I'm McKenna   Thu Dec 25, 2014 4:13 am

McKenna, you are learning very quickly.  This disease is considered a rare one and I think there are a lot of doctors out there who want nothing to do with it.  They don't see enough IIH patients to make it worth their time to learn about it and try to "fix" it.  From what I have read, they say that this never really goes away but, it can go into remission.  So we have to be our own advocate.  Don't let the docs get to you.  Keep fighting, get a good doc onto your side and work on getting this thing behind you.
Where in Texas are you?  I think there are some good docs at Baylor.  If you need a name close to home I can ask my docs for a recommendation.  It was my Interventional Radiologist that found my IIH and fought hard for me.

Saving your vision is #1.  Often the damage is reverseable, but not always.  For that reason alone, do what you can starting next Monday to find a new doc.  

Your OP's are both considered "high."  The big question is, did you find your symptoms improved right after having fluid withdrawn or were they worse?  Unchanged?
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Hello I'm McKenna

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