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sudden onset Nystagmus

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Old 03-16-2010, 01:07 PM   #1
Join Date: Mar 2010
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Sarahgirl HB User
sudden onset Nystagmus

Several years ago I was driving to work and had problems looking at the stop lights, seemed oblong, then 10 minutes later I had trouble looking to the left, felt like rubber band pulling eye back to right, could not focus on any other distance other than about 30 inches, balance problems, fatigue, over all ill feeling, after multiple dr specialties including exploratory ear surgery, I ended up with a neuro ophthalmologist who did extensive testing, I could hold my right eye still and straight as long as the left eye (which had the majority of nystagmus) Unless the left eye was uncovered then Nystagmus on both eyes, after different medications and high doses of steroids, Plasma pharesis
was introduced, after 7 treatments, my nystagmus stopped, long story short, I had two other episodes before the dr kept me on the plasma as maintance, did fine until our insurance changed now our current insurance carrier will not pay for the treatments, I have never been diagnosed and now I am becoming symptomatic again, Looking for any one who may have symptoms similar or know of any research clinic that may want to take me on as a complicated case, the drs think it maybe a rare autoimmune of my brainstem, I also have a son who is chronically ill with a diagnosis of Familial meditterean fever syndrom, he has one genetic marker instead of two but I am not so sure that is what he has..... I currently have a lot of medical bills and can not afford to go back to the mayo clinic.
any help or suggestions would be great

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Old 03-16-2010, 02:02 PM   #2
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Join Date: Jan 2002
Posts: 2,365
AnnD HB UserAnnD HB User
Re: sudden onset Nystagmus

I guess I am not had to have a diagnoses ...your doctor that was treating you would not of gotten paid without a diagnoses. I would suggest two things ...if your current provider is covered by your this insurance then enlist his help to appeal this insurances decision not to pay for this particular treatment...If he just isn't on their preferred provider list then get your records from your and take them to an eye doctor your new insurance will pay for and ask for him/her to review and see what they can do for you. There may be more than one way of treating your condition that your new insurance will cover but you are going to have to do some leg work. Start by calling this new insurance and ask what the appeal process is. Good luck.

Old 03-17-2010, 06:55 AM   #3
Join Date: Mar 2010
Posts: 2
Sarahgirl HB User
Re: sudden onset Nystagmus

Hi and thanks for responding, I did not have a diagnosis other than Nystagmus when my first insurance covered the plasma treatments, I was part of a medical group and if a doctor would require a treatment, the insurance paid, then Aurora affliliated with us and we went to their insurance policies which will not cover the treatment unless I have a diagnosis to support the treatment, I have been thru the review board and their suggestion was to Patch my eye, Aurora would not take my second opinion drs advise to continue treatment that they did not know exactly what I had but the treatment was working, and he was a Aurora physician, so I was told I would need to seek the opinion of the Mayo clinic in rochester, MN
which I did, the insurance will not pay at in network rate, so I would be responsible for the first 6,000 dollars plus then would only cover at 50% reimbursement, so I did go and the drs there are convinced that I do have a rare autoimmune of the brainstem, but all my tests were negative and felt that because I was on the plasma treatments every 2 weeks that it would be inconclusive, for4 days I know have a bill over $3500.00 out of my pocket
and I can not afford to go back for further testing... so I am between a rock and a hard place, mean while my vision is getting worse, I can no longer see speed limit, can't look down a hallway or anything too far away, I have no depth perception, extreme fatigue, and trying to work a full time job. Yet the Drs with in my network will not touch me, don't know what to do for me
I have been on all sorts of different medications, went 4 months just trying different medications before the neuro ophthalmologist decided to put me back on the plasma treatments and then kept me on every two weeks as maintance, My treatments were cut off on 1-16-09

Old 04-03-2010, 10:18 AM   #4
Join Date: Apr 2010
Posts: 1
jujup1983 HB User
Re: sudden onset Nystagmus

Mayo does have programs for those who are financially challenged.
There are also numbers to call on then financial help for search bar Mayo really does do a lot for those in need

Old 04-03-2010, 01:49 PM   #5
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Brocallie HB UserBrocallie HB UserBrocallie HB UserBrocallie HB UserBrocallie HB User
Re: sudden onset Nystagmus

Were you tested for myasthenia gravis?

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