I am new


Posted by Valarie G. , Jun 09,2001,10:02   Archive
Hello to everyone, I need some help as I am still trying to determine what type of dystonia I have. My eyes are somewhat affected as in...upon awakening in the morning my eyes would be going extremely fast from corner to corner, I could not focus. I would close them and reopen and they were normal.Then I've had many, many opthamolic migraines, (lightning flashes)lasting about 45 mins. Just recently while in bed watching TV my right eye lid wouldn't want to open like the left one, much slower. I also have extreme dry eye as opthamoligist tested me for this.Ive been reading and researching for days. You guys are the ones I know to help me and I appreciate any help from you. Many thanks!! Hugs,Valarie



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Re: I am new

Re : I am new --- Valarie G.
Posted by Moderator-JB , Jun 09,2001,10:34 Top of Thread Archive
Welcome, Valarie:

My suggestion would be for you to use the link at the upper right corner of this page - 'BEBRF Main Pages' and read through all of the descriptions.

Not being physicians (just patients ourselves) we cannot diagnose your condition. Much of what you are describing does not quite fit with what most of us experience though, with the exception of the dry eye and slower opening of one eye.

Write to the BEBRF office and request a list of physicians established in your area that treat Blepharospasm. Many doctors do not have experience with this.

Have a great day,

Judy Blackman
blkmn36@earthlink.net
Moderator




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Re: I am new

Re : I am new --- Valarie G.
Posted by June in Toronto (June Floyd,June in Toronto), Jun 09,2001,13:34 Top of Thread Archive
Welcome to the bb Valerie, sorry to hear you are experiencing such problems. I'd had beb and meige for 6 years now and the symptoms are different from what you are experiencing. With regard to dry eyes you should use preservative-free drops during the day and preservative free cream at night. The night-time cream should be washed off the lids in the morning with either a baby shampoo or a lid-care product for this purpose. Once the eyes are lubcricated well you might be able to deal with the other problems. Good luck and welcome again.

June in Toronto




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Re: I am new

Re : I am new --- Valarie G.
Posted by Sally - in - Idaho , Jun 09,2001,13:36 Top of Thread Archive
Hi Valarie ... "... I could not focus ...." This was one of my early symptoms and it about drove me nuts trying to make ophthalmologists understand and listen to me. They just kept prescribing new lenses and then referring me to another in their practice. I never did get any answers regarding that annoyance.

After about the third session of Botox (I get 100 units every eight weeks), the focusing problem got a bit better, but it is beginning to be troublesome again. I think it is more of a problem when I am tired or under stress so I am back to trying to take a couple of naps a day.

I also have one eye that doesn't want to open completely. It does okay when I am home, especially if I'm alone and can do things at my own pace, but it really goes on strike when I am in a car or in other buildings.

Judy gave you good advice, re contacting the BEBRF. I hope you find answers and that you will continue to post here.

Sally in North Idaho where it is cool and windy today.




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Re: I am new

Re : I am new --- Valarie G.
Posted by Shirley-Arkansas-USA , Jun 10,2001,21:52 Top of Thread Archive
Hi Neighbor,
I live across the creek from you. I'm with Judy in that it doesn't really sound typical of Blepharospasm.
Eyes darting back and forth is sometimes a neurological problem but not necessarily a form of dystonia. Nystagmus is a term for horizontal motion of the eyes back and forth. I don't know if that is what you have or not. You might want to do a search for that term and see what it says. I believe that it can be related to inner ear problems, multiple sclerosis and types of brainstem dysfunction. I used to work for an ENT doctor and there are specific tests that can be done to determine the cause. You probably should start by checking with your neurologist.



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Re: I am new

Re : Re: I am new --- Shirley-Arkansas-USA
Posted by Valarie G. , Jun 12,2001,06:17 Top of Thread Archive
Hi neighbor,
I was told by opthamologist the word nystagmus. My neuro is having a autonomic test ordered for me, do you know what that is? He said you lay on a table and are hooked up with all kinds of monitors. I've had 3 MRI's and know I don't have MS. Where is a good place to search for nystagmus. Also how does it explain my left hand curling up? As you can tell I have a lot to learn yet. I am SOOO glad your surgery was a success....good for you!! Hugs, Valarie



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Re: Nystagmus

Re : Re: I am new --- Valarie G.
Posted by Shirley-Arkansas-USA , Jun 12,2001,15:42 Top of Thread Archive
Hi Valarie,
Check out the link below to Health on the Net and do a search for nystagmus, there. That will get you started. There are any number of health related sites that you can go to.
I'm not familiar with the names of the tests to check for Nystagmus so can't help you there.
It may not have anything to do with your hand curling up or it may be a neurological problem that is causing you to have a variety of symptoms. Your neurologist could better answer that.

My surgery was helpful. I'm glad that I had it done. I still have Blepharospasm and still have symptoms and will still have to get botox but it has helped my apraxia problem and that was the most troublesome problem. Still can't drive. But things are improving.

Shirley in AR. across the creek from Valarie

http://www.hon.ch/




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