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katiemarie
09-18-2007, 07:45 PM
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!

Saysusie
09-19-2007, 09:14 AM
Hi Katiemarie :D
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

Maggie17
09-19-2007, 01:32 PM
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

SonyaLA
09-20-2007, 04:19 PM
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

red
09-21-2007, 07:22 PM
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

PinkButterfly
09-27-2007, 02:43 PM
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

Saysusie
09-29-2007, 01:34 PM
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

PinkButterfly
09-30-2007, 05:10 PM
Thanks for the warm welcome!