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 Total Frustration

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ladonna2rose
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PostSubject: Total Frustration   Wed Jun 22, 2011 12:23 pm

Hi all, haven't posted anything for awhile but just had to share this. I was diagnosed in 2002 with IH, lost my medicare supplemental insurance in 2005 and have not been able to see anyone for treatment other than my primary physican since then because of lack of insurance.
I got so bad that my primary called KUMC in Kansas City, well it took them 3 months to get me in, then when I finally got there last week, the Dr. I saw which was a neurology resident, ( guess you get what you pay for), checked my eyes, without dialation, then went to look at my MRI's, came back with another DR.?, told me they could get my MRI images to come up so they couldn't look at those, then started to tell me that I don't have IH because the nerves in my eyes weren't swollen. The other Dr. commenced to tell me that they had talked and had come to the conclusion that I have just been depressed for the past 8 years............I was totally blown away, then they gave me a script for a nausea medicine and told me to take a Beneydryl pill with it and that would take care of the headaches.
It was evident that they didn't have a clue about IH, because they asked me how come none of the other Dr's that I have seen had never given me anything stronger than Hydrocodone. Never commented on the LP's that I have had in the past in which all pressures were extremely high.
I was so angry, I have waited years to get treatment and this is what I got.
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Heidi
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PostSubject: Re: Total Frustration   Wed Jun 22, 2011 9:23 pm

I am absolutely struck dumb by this, and feel so angry for you! It's clear that they have never bothered to familiarise themselves with IH, because if they were they would know you can have it without Papilloedema. That they have not even been thorough with the tests, and dismissed looking at your MRI for such a ridiculous reason is totally not acceptabel.

If you go to this link Advocacy for Patients with Chronic Illness I'm sure they would be able to help you, and have even said that they will help sufferers of IIH with free legal advice where they can.

Hope this helps and let me know how you get on hugs

Heidi xx
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ladonna2rose
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PostSubject: Re: Total Frustration   Fri Jun 24, 2011 1:27 am

Thanks Heidi, I saw my primary physician yesterday and he was blown away too, angry to say the least. He told me he expected them to put me in a bed and see if a LP was possible, since the last one I had went so badly, and if not he said he thought they would speak to me about a shunt. He said he is calling this Dr. he calls a super specialist neurologist, and beg him to please see me. It's a shame that we have to struggle with this disease, but to have to beg for treatment!!
I have once again put myself in God's hand.
Thanks for the link, take care and God Bless
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Wylee
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PostSubject: Re: Total Frustration   Fri Jun 24, 2011 5:14 am

I hope you are able to get the help that you are looking for,
I have Medicare and yet they battled with my Doc about doing a lumbar drain test, saying it wasn't necessary. After a peer to peer they relented and agreed to allow an "observational period" of 72 hours but we'll see when and if they pay the bill. Medicare is not an easy route to go.
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medmisfit
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PostSubject: Re: Total Frustration   Fri Jun 24, 2011 4:43 pm

I'm sorry you've had such a difficult time getting treatment..at least it sounds like your PCP is a good advocate and you'll see someone soon! If they're going to do another LP, I would request it by Fluoroscopy. I had a horrible time w/ LP's until they started using this continuous x-ray technique. I also have learned to request no students or residents.. hopefully you'll have a much better experience!

Take care, and keep us posted!
Juie
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PostSubject: Re: Total Frustration   Wed Jul 18, 2012 11:45 pm

I am sorry for what you are going through because I am there now! Hurting and no insurance--except my PCP is a dumba$$ (whereas you seem to have a great one) and I fired him because he refused to even do a lumbar puncture on me. He said, "the risks outweigh the benefit...it is just tension headache and you need to lose weight!" blah, blah, blah. Well, I got the second and third and fourth opinion and the second confirmed IIH.

I posted on here recently that I am at my wits end and don't know how I can take the pain anymore either. I have only been dealing with my pain for a little less than a year. I can tell you now I cannot go as long as you have with nothing!

I will pray for you and need prayer as well... fingers crossed

WE HAVE TO STAGE A COUP and GET DOCTORS TO HELP US AND GET HELP FOR THOSE OF US WHO ARE SUFFERING. I am open to any ideas about getting the word out!
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