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 Appointment update

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beautifulb

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PostSubject: Appointment update   Tue Aug 14, 2012 7:12 pm

When I went to a follow up appt. with my doctor yesterday it turned out a different MD saw me bc mine had to step out of the office and it just so happened that his mother in law also was diagnosed with IIH so he was very familiar with all the ups/downs of it and he endorsed me going to John's Hopkins when my other doctor discouraged it. I think God meant for me to see him instead. He told me that if John's Hopkins needed any further letter from their office he would write it and he was also encouraging me to get a shunt when my other doctor discouraged it. I am very encouraged. He checked my magnesium, potassium levels with cbc and cmp. He said he did not see any papilledema yesterday. I have not heard back about the labs yet but he put me on protonix in case it's an ulcer. I had an epidural steroid injection today bc I have cervical discs that are displaced as well as severe arthritis in my spine. The last shot helped so I hope this one does as well. It's supposed to last a few months. I also talked over my thoughts about the shunt with another MD who specializes in spine and anesthesiology. He looked over my MRI report and agreed with my need for a shunt. My records were supposed to be sent to John's Hopkins at the end of last week so I should get a call any day. I am hopeful I can get a shunt to dispose of the need for my frequent LP's. I have read about the risks of frequent Lp's and I have to tell you as opposed to getting a shunt revision every few years I would rather do the shunt. I am looking at this from my medical knowledge and as a pt. I am currently weighing my checks and balances. I have been out of work since June 6th and bc of my dizziness on a daily basis and other various neuro issues including nausea vomiting, low blood pressure, low potassium, and low blood sugar I AM READY TO FEEL BETTER!!! Not to mention I carry the insurance and if my job fires me I have another problem to deal with!! I only have 3 more weeks of FMLA. That is what scares me most. I want all of you to know I am a BIG advocate for this disease here in GA and I won't stop until people take this more seriously!!!! I hope all of you are able to get some rest at some point today and I will keep all of you posted!!

Beth ;)
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BananasMom
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PostSubject: Re: Appointment update   Tue Aug 14, 2012 8:20 pm

Hi Beth! Smile Thanks for checking in -- what a great update! It's so wonderful to hear that you've found a doctor who is really in your corner and supporting your efforts to get well. I hope that you are able to get an appointment at Johns Hopkins relatively quickly so you can get on your way to having some relief. *big hugs* And THANK YOU for being proactive and letting people know about IIH! Very Happy
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Heidi
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PostSubject: Re: Appointment update   Tue Aug 14, 2012 8:48 pm

Beth I can't tell you enough how pleased I am for you hug indeed someone was looking out for you today! Hopefully you own have to wait too long for an appointment and I will have my fingers crossed for you. Thank you for bringing attention to IIH it's so important that we get awareness out there.

[You must be registered and logged in to see this image.]Heidi
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Wylee
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PostSubject: Re: Appointment update   Tue Aug 14, 2012 10:12 pm

Wow!! Does indeed sound like divine intervention.
Hope you get the appt soon!
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PostSubject: Re: Appointment update   Tue Aug 14, 2012 11:23 pm


Hi Beth,

I agree about the Divine intervention!

Let me just add that I highly recommend that you have an alternative set up as far as you insurance goes BEFORE your FMLA runs out.

Be blessed.
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beautifulb

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PostSubject: Re: Appointment update   Wed Aug 15, 2012 7:41 pm

Thanks so much guys!! I really appreciate all the support! thank you
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medmisfit
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PostSubject: Re: Appointment update   Thu Aug 16, 2012 3:28 pm

Beth, that is great news! I'm so glad you were able to connect w/ someone that understands IIH. As far as FMLA, you might want to look into HIPPA insurance options..just in case. Some employers will work w/ you as long as they know you're making progress, but others will fire you the day your FMLA runs out. A HIPPA policy is limited, but a lot more affordable..then you can transfer at any time. You should also be offered a COBRA policy, but they're pretty expensive b/c they know you have limited options. Most importantly, don't let your coverage lapse! You could be without insurance for a year or more due to a pre-existing condition, so it's important to stay covered. You can apply for Social Security Disability or Medicaid, if needed.

Good luck!!!!
Julie
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