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Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
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msmonaco
Posts: 5
Joined: Mon Aug 02, 2004 7:49 pm
Location: Southern New Jersey

new member

Post by msmonaco »

I just found this site and am really glad to be able to communicate with others in my boat. My Mom also had it, hers was severe before she passed away. I was told it is genetic, as I now have it too. Mine is more sporatic, it will drive me crazy for a period of time and then I have some peace. I take Mirapex for it up to .50mg at bedtime. sometimes it starts earlier in the evening and I have to get up and stand or walk til it lets up. I've had it for many years on and off and now that I'm older it bothers me while I'm riding in a car. And, when I take the medicine it seems to active the seizures and other times not, has anyone had that happen to them? I'm looking for a doctor at the University of Pennsylvania, can anyone recommend one. I have two names now a Dr Brooks or Cantor, does anyone see either of these doctors?
Today I didn't plan on doing anything, and so far I'm right on schedule!

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Welcome Mcmonaco

Post by jan3213 »

Hi. This is Jan

I've had RLS for about 20 years. I'm glad you've found us!! I've had RLS for about 20 years. I'm sorry you have it, too! I'm also on Mirapex, 1 mg. 2 x daily and also on Clonzepam, 2mg. 1x daily, which I take at bedtime. My meds control my RLS. I'm from Illinois and my neuro is from Barnes Hospital in St. Louis, Mo., so I'm afraid I'm not familiar with the two doctors you mentioned, but someone from this site might be. My doctor told me that RLS can be inherited. I believe my father might have had it. There are a lot of very nice, knowledgeable, helpful people on this site who are very willing to listen and share their experiences and any information they may have with you. Don't be afraid to ask questions and read as many threads as you can. That's the way I started. There is also a thread entitled ORP (Our Research Project) under General which many of us have listed questions which you might read which may be of interest and help to you. Later, you may want to list your own questions, but for now, I would read, read, read. And, feel free to ask questions. Anytime you post anything, it automatically goes to the top of a thread, so someone will see it right away. Again, welcome to our group. We're all friends here and we're all here to help each other!

Jan

Guest

new member

Post by Guest »

Thank you for your response, I take the Mirapex at bedtime, and I never heard of the other med you are taking. I have been going through the site and have gained a lot of facts that are of great interest to me. I was going to a pulmonary doctor in the very beginning who also dealt with RLS and put me on this med. But, I'd rather go to a doctor who really has much more knowledge of this disease. But, thanks again for the info that you suggested. msmonaco

jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
Contact:

Here are some doctors:

Post by jumpyowl »

Presbyterian Medical Center
Sharon Schutte-Rodin MD
39th & Market Street
First Floor PHI Building
Philadelphia PA 19102
215-662-8766
Sleep Medicine

University of Pennsylvania
David G Brooks MD PhD
Division Of Medical Genetics
3400 Spruce St Rm 538 MALO
Philadelphia PA 19104-4206
215-662-4740
Internal Medicine
Genetics

University of Pennsylvania Medical Center
Charles R. Cantor MD
11 W Gates Bldg.
3400 Spruce St
Philadelphia PA 19104-4206
215-829-6500
Neurology
Sleep Medicine

Childrens Hospital of Philadelphia
Thornton Mason II, MD, PhD
Wood Center
Division of Neurology
324 S 34th St Fl 6
Philadelphia PA 19104-4304
215-590-1718
Pediatric Neurology
Sleep Medicine

Thomas Jefferson University
Steven Mandell
125 S 9th St Ste 200
Philadelphia PA 19107
215-574-0075
Neurology

Pennsylvania Hospital
Tanya Simuni MD
Parkinsons Disease & Movement Center
330 S 9th St
Philadelphia PA 19107-6153
215-829-7108
Neurology

Margaret Zalewski
Fox Chase Neurologic Associates
7602 Central Ave Ste 203
Philadelphia PA 19111-2443
215-342-6481
Neurology

Arsenal Business Center
Irvin M. Gerson MD
5301 Tacony Street
Building #4
Philadelphia PA 19137
215-743-4200
Sleep Medicine

Gerson Associates PC
Irvin M. Gerson MD
5301 Tacony Street
Building #4
Philadelphia PA 19137
215-743-4200
Sleep Medicine

Temple University Health System
John Traveline MD
Sleep Disorders Center at Temple
3401 N Broad St
Philadelphia PA 19140
215-707-5900
Sleep Medicine

Temple University Health System
Francis Cordova MD
Sleep Disorders Center At Temple
3401 N Broad St
Philadelphia PA 19140-5103
215-707-5900
Sleep Medicine

Temple University Health System
Wissam Chatila MD
Sleep Disorders Center At Temple
3401 N Broad St
Philadelphia PA 19140-5103
215-707-5900
Sleep Medicine

Temple University Health System
Samuel Krachman DO
Sleep Disorder Center At Temple
3401 N Broad St
Philadelphia PA 19140-5103
215-707-5900
Sleep Medicine

Neurology & EMG
Reena Banka MD
2101 Brighton St
Philadelphia PA 19149-1802
215-333-6611
Neurology

Arthritis Group
James Vdell MD
7908 Bustleton Avenue
Philadelphia PA 19152
219-725-7401
Rheumatology


Dr. Cantor sounds promising but I do not know any of them.

Clonazepam / Klonopin is a hypnotic/tranquilizer.

It is hard to find a doctor who is an expert in this field. Philadelphia seems to have more than its share of them. It is important that they should have an open mind and a willingness to listen. Also read up on the disease and arm yourself with knowledge.

If you have any questions we are here for you.
Jumpy Owl

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