Results 1 to 8 of 8

Thread: New - from Florida

  1. #1
    Join Date
    Sep 2007
    Posts
    2
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default New - from Florida

    Hi there, I am new here but not to lupus. Because of a photo trail they
    have been able to date my lupus back 19 years. I am a medical mystery having negative ANA's and other specific lupus testing. Biopsy shows lupus and what started out as a butterfly rash is now a burnt up face.
    I am very sun/photosensitive becoming physically ill. They also think
    I may have ms in addition to the lupus and say it is not unusual for
    autoimmune disease to run together (I can think of better things to
    collect than autoimmune diseases) :roll: Since moving to central
    Florida I am having problems finding a doctor. Unlike anywhere else
    I have ever lived you don't actually see a doctor in a doctor's office.
    I would really, really appreciate it if anyone knows of a good rheumatologist and dermatologist in this area (Marion/Citrus County).
    We have no lupus support group in this area either so it is very
    hard getting help or learning how to deal with this here. Thanks for
    any help!

  2. #2
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,708
    Blog Entries
    9
    Thanks
    1,572
    Thanked 918 Times in 581 Posts

    Default

    Hi Katiemarie
    Welcome to our family. There is a forum on this site entitled "Support Group Locations" where members have contributed names and addresses of support groups in various locations.
    I did a search for rheumatologists in Marion County and came up with this list - THere are more, but I picked these because their specialities were a closer fit to Lupus:
    * Dr. Stephen Bookbinder, MD - An Internal Medicine Doctor and Rheumatologist in Ocala, Florida (FL). 3210 South West 33rd Avenue
    Ocala, Florida (FL).
    * Dr. Melvin M. Seek, MD - 2980 South East 3rd Court -Ocala, Florida 34471
    Specialties: Critical Care Medicine, Internal Medicine, Nephrology
    * Dr. Anju Vasudevan, MD - 1040 South West 2nd Avenue-Ocala, Florida 34474
    Specialties: Hematology, Internal Medicine, Oncology.
    You can also try this website: http://yellowpages.aol.com/doctors/rheumatology/fl/i/

    Perhaps someone else will have more information for you. Remember, you are not alone and we are here to help you in any way that we can!

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

  3. #3
    Join Date
    Aug 2007
    Location
    Alberta, Canada
    Posts
    27
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hi KatieMarie

    I have similar symptoms and they are also looking at MS but no one is willing to commit to anything yet. I order veils for my face from Sunveil in St. Thomas, Ontario. It is a special fabric that protects your skin from the dreaded sun. I buy the darker colours because I find the lighter ones increase the glare. It is surprising to me how many folks with sun sensitivity issues life in Florida! (Hmm, chicken and the egg :?:

    Cheers

    Maggie17

  4. #4
    Join Date
    Dec 2006
    Location
    Lake Alfred, Florida
    Posts
    62
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hi KatieMarie

    I live in Polk County Florida. A little ways from Citrus/Marion, but not that far. We don't have a group in this area, but I have the greatest rheumy! (in Lakeland) It might be too far for you, but if you get desperate, I would be happy to share details.

    Living with Lupus in Florida is a challenge, especially to those of us sun sensitive ones. I've learned to wear hats, keep umbrellas handy, and find shade where ever I can.

    SonyaLA

  5. #5
    Join Date
    Sep 2007
    Location
    Florida
    Posts
    5
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    I too live in Florida and have photosenstivity to the sun. I use the highest lotion I can find that protects from both UVB and UVA. I always wear a hat, long sleeves and long pants and carry an umbrella. I have also been issued handicapped parking so that I don't have to walk far in the sun if and when I go shopping. Florida is not the best place for people like us to live! It has become a joke in my family that I am turning into a vampire as I only come out at night. Now if they would just keep the malls open I wouldn't mind!!
    I also have changed the lightbulbs in my house to meet my needs and have had them changed at work (flourescent lights can be lower and meet requirements for filtering out uva and uvb which can effect lupus. This does help.Good Luck

    Red

  6. #6
    Join Date
    Sep 2007
    Location
    St. Petersburg, FL
    Posts
    12
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default Another newbie from Florida

    Hello! I am new here (also from Florida). I am a Registered Nurse and have had lupus for 22 years (that we know). Wish I could help you with finding good docs here KatieMarie. I have had a heck of a time finding a new doctor (moved here from Rapid City, SD, 1 1/2 years ago). I had fabulous docs in Rapid City. It's getting very frustrating to say the least.

    As I stated above, I've had lupus for many many years. I think I handled it much better when I was younger than I do now. I've been having a lot of problems lately so I'm glad I've found this forum!

    It's probably too far of a drive from you, but we have a lupus support group here in St. Petersburg. Our next meeting is Oct. 6 actually. I've only recently found them myself. :roll:

    take good care,
    Susan

  7. #7
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,708
    Blog Entries
    9
    Thanks
    1,572
    Thanked 918 Times in 581 Posts

    Default

    Hello Susan :lol:
    Welcome to our family. Like most of us, you have discovered that you probably suffered from symptoms of Lupus for many years prior to being diagnosed. Many of us have looked back on the aches, pains, etc. when we were in High School or even younger, and have said "I bet that was Lupus then!"
    I am glad that you joined us. You will find everyone here is very supportive, informative and caring. You are not alone!

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

  8. #8
    Join Date
    Sep 2007
    Location
    St. Petersburg, FL
    Posts
    12
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Thanks for the warm welcome!
    So long, and thanks for all the fish!

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •