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 Lin Diagnosed 8/13

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abvanjaxmom
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PostSubject: Lin Diagnosed 8/13   Mon Aug 12, 2013 11:01 pm

Hi!

I'm a very newly "diagnosed" mother of 4.

After a couple weeks of "visual disturbances" (basically vision gets blurry for periods of time randomly and is TERRIBLE when I wake up) I finally decided to make a trip to the optometrist. Last Thursday 8/8 I went for what I believed was an appt for Dry Eye. Boy was I wrong! After a general exam she asked if she could dilate my eyes and perform further testing. After completing the visual fields, she explained that due to the swelling of my Optic Nerves and loss of some visual accuity, she believes I have Pseudo Tumor Cerebri. She said not to let the name scare me, um hello?! Now terrified here! Of course I went home and googled and sure enough it sounds more than a little scary. I managed to get an appt with my family physician the next day 8/9. There pretty much the same thing was repeated to me..Papilledema, Loss of Acuity in periphreals, Unknown cause...Dr. said I would need an MRI to confirm diagnosis. Well the MRI was scheduled for THIS Tuesday (8/13) and I was excited to have gotten in reasonably soon. However, I just receieved a call that insurance needs a prior authorization and the hospital will NOT perform the MRI until that happens. It sounds like this may take up to a week. Needless to say I'm devistated and incredibly scared. Dr. will not perscribe any medicine until after we have a firm diagnosis. How can they wait so long? I guess my question is has anyone else had a similar experience with no one acting like this is serious? Am I blowing things out of porportion? I have googled my heart out trying to find others "timelines" from diagnosis to treatment and it seems most everyone was treated immediately. For many it was the diagnosis that took a while. I guess I want to hear others experiences in the road from diagnosis to treatment! I feel like everyone should be moving faster, but maybe that's just my paranoia of going blind kicking in.
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Wylee
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PostSubject: Re: Lin Diagnosed 8/13   Wed Aug 14, 2013 7:29 pm

Hello Lin, and welcome to the forum.
Your worries are very understandable.  Indeed, just the sound of this disease, Pseudo TUMOR Cerebri, is enough to make you want to jump out of your skin.  Yes, it would be good to be seen sooner rather than later, but, the type of waiting game you are experiencing is not out of the norm.. Prior authorization is common.  But, just having an MRI will NOT confirm PTC (aka IIH).  It will rule out other possible causes.  The actual confirmation is made by spinal tap (lumbar puncture).  If the opening pressure reading is elevated, and the spinal fluid tests out to be "normal", that is when the diagnosis of PTC/IIH is official.
You are still early in your journey with this disease, so try to not worry.  We will help answer your questions and be there for moral support.  BTW, there are many who have been hunting down a diagnosis for years, so do not panic with your waiting time.  
While you are waiting for further tests, I would suggest trying to sleep with your head raised to a 45 degree angle (I use a pillow wedge).  It just may help.
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medmisfit
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PostSubject: Re: Lin Diagnosed 8/13   Wed Aug 14, 2013 7:42 pm

Welcome to the group!!! Unfortunately, diagnosis and treatment can be a long process of 'hurry up and wait'. My insurance needs pre-authorization, which is basically a 5 day notice. My diagnosis wasn't confirmed until the 2nd or 3rd LP..basically draining the fluid got rid of my symptoms, so confirmed IIH. Hopefully once diagnosis is confirmed they'll get you scheduled with neurologist or neuro-ophthalmologist to get treatment process started. I know very few people that got a quick diagnosis and treatment, but will move faster with visual disturbances. It was actually close to a year before I made any progress, so you're doing fine.. hang in there!!!
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BananasMom
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PostSubject: Re: Lin Diagnosed 8/13   Wed Aug 14, 2013 7:47 pm

Hi! Smile Welcome to the forum. I'm glad you've found us! 

I know it's hard, but try not to be too worried about having to wait a week for your MRI.  In my case, I had sudden onset of double vision along with swelling of the optic nerves, and it was STILL another month before I found a provider who properly put those pieces together and got me to a neuro for an MRI.  And then as Wylee said, once my MRI came back clear, a lumbar puncture was ordered which definitely confirmed my diagnosis of IIH.  And after that, I began treatment.

Let us know if you have questions and we'll be happy to help. *hugs*
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Sophiasmom
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PostSubject: Re: Lin Diagnosed 8/13   Thu Aug 15, 2013 3:35 am

I'm so sorry Lin, you must be scared.  it took 11 years for me to figure out what was wrong and I had to ask for my spinal tap.  but I never really had vision problems.  well, I did,  but was diagnosed with other things because I never had papilledema.  but I don't have any acuity loss and if I did I would be pretty anxious to get started on treatment too.  I am not sure why there has to be a delay.  there is such a thing as URGENT authorizations.  I mean, if they still haven't completely ruled out a brain tumor, who says this isn't urgent?  if it was enough to admit you to the hospital then your insurance would have to pay for whatever was ordered; they don't make you wait for authorizations when you are in the ER or an inpatient.  if you can get your doctor to call the insurance company, there might be a way for them to talk directly to the person who makes the decisions and authorize it on the spot.  and get an auth for the LP at the same time.  I think the problem is you are dealing with your family practice doc and this is really not in his realm.  you need to be seeing an ophthalmologist and a neurologist, and they know that sudden onset vision loss is a more urgent problem and that this delay is not really acceptable.  I've heard stories of people getting admitted, or getting referred to the ER immediately from the ophthalmologists office to get these studies done pronto.  it's not unreasonable for you to expect.
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abvanjaxmom
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PostSubject: Re: Lin Diagnosed 8/13   Thu Aug 15, 2013 10:25 pm

Thank you all for your encouraging words! It's really helped me knowing there are others out there who have been in my shoes and know EXACTLY what I am going through. As an update, I ended up calling my Dr's office back and while the nurse didn't actually recommend..she hinted and eluded to the fact that if I went to the ER they would have to get to the bottom of things URGENTLY. So Monday night that's exactly what I did! There they immediately questioned why my doctor hadn't done anything, even perscribed Diamox yet. Well I'm glad I'm not the only one who wondered! They did a CT scan, which revealed nothing abnormal so off for a lumbar puncture I went. That of course revealed elevated pressures. They removed some of the excess fluid at that time. Neurologist on duty that night also perscribed Diamox 500mg twice daily for 30 days. I was EXTREMELY impressed with how attentive the ER was to seeing that I felt better! I've had some awful experiences in the past, so this was a welcome change.

Since the LP, my headache is gone and my vision issues seem to be slowly resolving. They are still there but definitely better.

Saw the Neurologist today. She encouraged EXTREMELY regular follow up with my Optometrist. Jokingly she said "you can avoid seeing me if you so choose, but you can not skip the visits with the eye doc!" She also extended the refills of my Diamox for the next year. "You won't need to be on this forever, but it will take time before I'm comfortable trying you off it". She also put me BACK on the Topamax I was taking previously for migraines.

Have any of you taken Topamax and Diamox together?  Both on their own give me AWFUL tingliness in my hands, feet and face..I'm scared for what it will be like with them TOGETHER!!!!

Again thank you all for being so wonderful. This board is such an amazing resource!!! Hopefully my info can help someone else who is new. If there's anything I've found out in the last week, it's never give up and be insistent!!!
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Sophiasmom
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PostSubject: Re: Lin Diagnosed 8/13   Fri Aug 16, 2013 6:28 am

wow, that is great, good for you!  glad you are feeling better.
If the neurologist thought it was OK for you to be on both Topamax and Diamox, then I guess that's OK, but I would think one or the other myself.  or at least take one for a week or so before adding the other.  I hope both together ends up being OK for you.
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medmisfit
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PostSubject: Re: Lin Diagnosed 8/13   Fri Aug 16, 2013 5:37 pm

That is good news..I'm glad you were able to find some relief!!! I would keep a symptom log that includes medications, so you can track any changes once you introduce Topamax. Maybe talk to pharmacist about best way to take the meds together..they know more about interactions and everything than doc. Good luck, and keep us posted!
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