Hi from Scottsdale


Posted by Virginia , Aug 15,2001,22:31   Archive
Couldn't resist the opportunity to check in with you. We got here early to do a little sightseeing.

Virginia, not in AL




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Re: Hi from Scottsdale

Re : Hi from Scottsdale --- Virginia
Posted by Pat Soulia (Patricia Soulia,Pat Soulia), Aug 16,2001,07:31 Top of Thread Archive
Hi Virginia
I am new at using the BB so hope this gets to you when you return from Arizona. Hope you have an enjoyable and successful trip. I have been to Scotsdale as I have a sister who lives in North Phoenix and it is a lovely place. I would like to have gone to the conference but my sister happens to be East at the present time and I wanted to have the opportunity to visit with her although I am sure the conference would have been a rewarding experience. Maybe next year.

I have been diagnosed with belpharospasm and some Meige Syndrome and have been getting botox injections for a year and a half. Hopefully some day they will find a cure for this troublesome problem but until then I will have to make the best of it like we all are trying to do.

Have a wonderful time and a safe trip back home.

Enjoy your stay
Pat Soulia in Stroudsburg, PA




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Re: We are on a similar time frame

Re : Re: Hi from Scottsdale --- Pat Soulia
Posted by Sally - in - Idaho , Aug 16,2001,17:54 Top of Thread Archive
Hi Pat,

I'm glad to see you posting. Welcome! You and I are on a similar time frame as I've been diagnosed (finally) about two+ years and have been having Botox injections since October 1999. I have mine every eight weeks; how often are yours? Do they give you adequate relief? For me, they are definitely worthwhile, but certainly no "cure."

Photosensitivity is my worst symptom. Are you bothered by that?

Sally in North Idaho




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Re: We are on a similar time frame

Re : Re: We are on a similar time frame --- Sally - in - Idaho
Posted by Pat Soulia (Patricia Soulia,Pat Soulia), Aug 17,2001,09:12 Top of Thread Archive
Hi Sally,

I have been getting my botox injections every 3 months but they do not last me that long. I am suppose to go in September but will be going next week as I think I will have to get them every 8 weeks to get better results. 3 months does not work for me. My problem is blinking and squinting and I am extremely light sensitive. Fortunately, my eyes do not close and stay closed - I never had that problem - this condition has been longer than 2 1/2 years before I was finally diagnosed. I live in Stroudsburg, PA (the Pocono Mts.) and we do not have the best of doctors in this area. I did go to a local dr. for a year without any results - just a lot of talk and she did not know how to give the injections as far as I am concerned. It took her 1 hour and I was a nervous wreck when I left her office.

I now travel to John Hopkins Hospital in Baltime, Md. which is 4 1/2 hours from my home but it is worth the trip and my husband does not mind driving there. I see a Dr. Miller who is a neuro-opthamologist and also teaches at John Hopkins and it only takes him a total of 15 minutes. So far I am very pleased but this will only be my 3rd visit to him. I went 4 times to the other doctor last year with little or no results so I feel like I am starting all over again. I also take Klonopin which is a muscle relaxer but I do not get good results from this so I am going to ask Dr. Miller about stopping this medication and just stick with botox every 2 months. I do not like to take medication anyway.




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Re: We are on a similar time frame

Re : Re: We are on a similar time frame --- Pat Soulia
Posted by Mindy , Aug 17,2001,20:07 Top of Thread Archive
Hi Pat,
If you ever consider changing to a movement disorder specialist, they have excellent doctors in Manhattan. Much closer than 4 l/2hrs. from
where you live. I live in Staten Island.
Mindy in NY



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Re: We are on a similar time frame

Re : Re: We are on a similar time frame --- Mindy
Posted by Pat Soulia , Aug 19,2001,18:40 Top of Thread Archive
Hi Mindy:
Thanks for informing me re: movement disorder specialists in Manhattan. Do you see a doctor in Manhattan? I know 4 l/2 hours is a big trip and sooner or later I think I would like to get closer so any info you can pass on would be helpful.
Pat Soulia In PA



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Re: We are on a similar time frame

Re : Re: We are on a similar time frame --- Pat Soulia
Posted by Mindy , Aug 19,2001,20:48 Top of Thread Archive
Hi Pat,
I see Dr.Susan Bressman in Manhattan.
Dr.John Rogers who is also excellent is there also.
They are well known and highly respected doctors in this field.
Beth Israel Medical Center
10 Union Square East suite 2R
New York, NY
phone (212) 844-8379

You can always email me if I can be of further help.
Mindy in NY




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Re: We are on a similar time frame

Re : Re: We are on a similar time frame --- Mindy
Posted by Pat Soulia , Aug 20,2001,09:24 Top of Thread Archive
Hi Mindy:
Thank you for the info on the Doctor you see in New York. I might consider making a switch a few months from now. I have only been seeing Dr. Miller at John Hopkins since January when I went for an evaluation. I started injections in April which went fine than again in June which did not work out very well. I am scheduled for Sept. but will be going on August 28. My husband and I are leaving for North Carolina to visit my daughter and her family and on the way back I am stopping for the injections. I too was told I have Meige Syndrome.
I am going to go every 2 months instead of every 3 to see how this works out. Hopefully I will have better results. I keep hoping some day I will wake up and this has gone into remission. Believe I mentioned my condition started about 4 years ago but it took almost
l 1/2 years before I was properly diagnosed. Also the doctor I saw here in PA was not very good at giving injections so that is why I switched. I am originally from Long Island, Floral Park, NY so I am still somewhat familiar with the city. Before moving to the Poconos (35 years ago) I worked on Wall Street. Driving into the city from the Poconos is hectic - we do have commuter buses that go in every morning so it would not be a problem for me.
Believe I saw Dr. Bressman's name on the list of speakers at the conference. Have you had good results from your injections? Would like to hear from you as I know when the winter months arrive I probably will not be able to travel to Baltimore so I have to give this some serious consideration. Thanks for all your help.
Your mentioned I could e-mail you with questions but I did not see your address posted or perhaps I just don't know where to look for it. I'm new at the bb and am still trying to find my way around.

Regards.
Pat Soulia in Stroudsburg, PA
e-mail: esoulia@enter.net




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Re: We are on a similar time frame

Re : Re: We are on a similar time frame --- Pat Soulia
Posted by Mindy , Aug 20,2001,10:55 Top of Thread Archive
Hi Pat,
My email address is:
MindysPlace@aol.com
When you click on to read a post, if the person's name
shows up in blue, you can click it on and an email will pop up with the person's email address.
When you post a message and insert your email address right above the
"subject", your name will show up in blue.
Dr. Bressman was a speaker at the conference.
Email me with all your questions, I'm more than happy to help.
hugs,
Mindy in NY



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Re: We are on a similar time frame

Re : Re: We are on a similar time frame --- Mindy
Posted by Joanne Matuzas , Aug 20,2001,11:08 Top of Thread Archive
Hi Mindy, I guess you noticed from the BEB newletter that Dr. Bressman
was scheduled to speak re genetics at the scientific symposium at the conference, but she didn't make it. Something about sinisitus and being concerned about flying. Dr. Adler gave her talk and apologized to her patients who came to the conference expecting to see her. I am glad you are pleased with her treatment. Joanne M. San Diego, CA



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Re: We are on a similar time frame

Re : Re: We are on a similar time frame --- Joanne Matuzas
Posted by Mindy , Aug 20,2001,12:01 Top of Thread Archive
Hi Joanne,
I am disappointed to hear she didn't make it.
I was hoping she could have given some information about the Parsitan I am taking to our friends and the doctors there.
I guess what's meant to be, is meant to be.
thanks Joanne,
Mindy in NY



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Re: We are on a similar time frame

Re : Re: We are on a similar time frame --- Mindy
Posted by Kelly Saffell , Aug 21,2001,12:36 Top of Thread Archive
Can you tell me a little bit about parsitan. I haven't been able to find any info on it.

Kelly




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Re: We are on a similar time frame

Re : Re: We are on a similar time frame --- Kelly Saffell
Posted by Mindy , Aug 21,2001,20:46 Top of Thread Archive
Hi Kelly,
Parsitan :
WebMD - ANTIDYSKINETICS (Systemic)
http://my.webmd.com/content/asset/uspdi.202057#GXX03
This will take you to the WebMD website.
Scroll down the list when you see Parsitan click on the little 3
next to it and you can read the medical description.
It is sold in Canada. When it was sold in the US it was called Parsidol. It's no longer sold here because
it wasn't making enough money for the drug company.
My doctor's office faxes a prescription to a Canadian pharmacy and the pharmacy sends the Parsitan to me via Fed Ex. in a couple of days.
It is not covered by insurance, because it is not sold here. A months supply is about $40. approx. They send a 2 mos. supply at a time. Each bottle has 100 pills, 50mg. each pill. You can break them in half and even in quarters.

It's supposed to work like Artane, without the bad side effects of Artane.
When I was on a higher dose I got dry mouth, as time went on I did start having memory problems. I would cut back half a tablet and my memory improved and my spasms remained under control. It's not habit forming and it doesn't make me tired.

Mindy in NY




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Re: We are on a similar time frame

Re : Re: We are on a similar time frame --- Sally - in - Idaho
Posted by Pat Soulia (Patricia Soulia,Pat Soulia), Aug 17,2001,09:19 Top of Thread Archive
Hi Sally,

I have been getting my botox injections every 3 months but they do not last me that long. I am suppose to go in September but will be going next week as I think I will have to get them every 8 weeks to get better results. 3 months does not work for me. My problem is blinking and squinting and I am extremely light sensitive. Fortunately, my eyes do not close and stay closed - I never had that problem - this condition has been longer than 2 1/2 years before I was finally diagnosed. I live in Stroudsburg, PA (the Pocono Mts.) and we do not have the best of doctors in this area. I did go to a local dr. for a year without any results - just a lot of talk and she did not know how to give the injections as far as I am concerned. It took her 1 hour and I was a nervous wreck when I left her office.

I now travel to John Hopkins Hospital in Baltime, Md. which is 4 1/2 hours from my home but it is worth the trip and my husband does not mind driving there. I see a Dr. Miller who is a neuro-opthamologist and also teaches at John Hopkins and it only takes him a total of 15 minutes. So far I am very pleased but this will only be my 3rd visit to him. I went 4 times to the other doctor last year with little or no results so I feel like I am starting all over again. I also take Klonopin which is a muscle relaxer but I do not get good results from this so I am going to ask Dr. Miller about stopping this medication and just stick with botox every 2 months. I do not like to take medication anyway.

I have a hard time reading, do not watch TV but I do drive locally. I used to be able to drive to Long Island, NY to see some of my family but I cannot do that at this time because I am extremely light sensitive. Yes, having a picture taken is not the best. I sometimes feel like my face is out of shape on some of the photos and it is very difficult to get one with a smile. Guess it is the flash and also the botox may have something do do with that also as it does something to the muscles in the face I believe. I am going to ask my doctor about this when I see him. I sometimes feel like I lost my independence but I am determined to work at this problem and try to get it into remission. Will keep you posted.

Nice to hear from you and have a pleasant week.

Pat Soulia in Stroudsburg, PA
email: esoulia@enter.net




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Re: We are on a similar time frame

Re : Re: We are on a similar time frame --- Pat Soulia
Posted by Ann Doyle , Aug 17,2001,19:51 Top of Thread Archive
Welcome home Pat. Is that 4 1/2 hours one way? I thought I had it bad going 2 1/4 hours one way. I had very good result with my first and 2nd. Botox. I'm due for number 3 Sept. 20. I was thinking of going local but after what you said, the trip is probably worth it.
I also took klonopin. It really helped a lot but I became very depressed --a sometimes side effect, that left soon after I stopped taking it. The choice was between seeing or being depressed. YUCK!!



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Re: We are on a similar time frame

Re : Re: We are on a similar time frame --- Ann Doyle
Posted by Pat Soulia , Aug 19,2001,09:27 Top of Thread Archive
Hi Ann
I answered your message on Aug 18 but it just shows We are on the same time frame - Pat Soulia. Guess I don't know how to send the message properly to get directly to you with you name showing on the bb.
I click on post reply and all that comes up is Name, E-mail, Subject and message which is where is type the message. Then at the bottom it show Disply html as text and I click on that. Am I doing something wrong?



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Re: How to post reply

Re : Re: We are on a similar time frame --- Pat Soulia
Posted by Sally - in - Idaho , Aug 19,2001,19:18 Top of Thread Archive
Hi Pat,

I'll try to explain how to post a reply on the BB. When you are reading a message to which you wish to reply, stay on it and click "post reply" in the choices line. Then a blank will come up for you to type on (it will have your name on it and the subject and will be beige in color). When you finish typing your message, scroll down to the bottom and click "post." You only need to do this once. It might be kind of slow. Then the "thank you" message will pop on the screen and you just "back" until you are back at the BB. You will NOT see your message unless you click "refresh" or go to the main pages and return to the BB.

I think this might be a bit muddy, huh!! Maybe someone else can be more clear. Oh well, I gave it a try. Good luck.

Sally in North Idaho




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Re: How to post reply

Re : Re: How to post reply --- Sally - in - Idaho
Posted by Pat Soulia , Aug 20,2001,09:39 Top of Thread Archive
Hi Sally
Thank you for your help re: how to post a reply. I appreciate your help. I have used computers for many years but never really got involved in e-mail too often so this is all new to me. I know in time I will get much better posting on the bb.
I enjoy using the bb as it sure gives one a lot of information and help. I am anxious to hear how the conference went and I keep looking for someone to post. Imagine those who went perhaps stayed on longer to see the area or maybe catching up on sleep they lost keeping late hours. I would like to have gone but my sister who lives in North Phoenix was visiting East so I decided to spend time with her as I do not get to see her too often. She is not too far from Scotsdale and I have been there so I am sure all the conference goers are having a ball. It is a beautiful area and a lot to see.
Hope to talk to you again soon.
Regards,
Pat Soulia in Stroudsburg, PA



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