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View Full Version : Just a little Hello, I'm new to the group


heidinklein
08-06-2002, 01:02 PM
Hi there,

I'm Heidi, 24, who has had P. for at least 18 years, but was misdiagnosed until this last year. I was misdisgnosed with excema around 5 or 6. I guess Mr. Dermatologist forgot where excema is located and chose Psoriasis is instead. Whoops!

So in November, I had a terrible breakout of psoriasis, misdiagnosed as scabies. This dermatologist (which I am no longer seeing) gave me some ointment which burned my skin and made the psoriasis much much worse! After seeing three other unhelpful physicians, I saw a knowledgable derm. who within 10 seconds of looking at me saw the P. I had always had classic, classic scales on my elbows, knees, and ankles, but after this breakout it has spread to my scalp, face, butt crack, and other lovely places I dare not name.

Two weeks after the breakout my hands and feet started hurting in a terrible inside, swelling pain. One magical trip to the Urgent Care and I was diagnosed: P. Arthritis!! Ah yes. Fortunately my Urgent Care Physician also has PsA, so she was able to immediately diagnose it.

So I have been learning more about the arthritis, because I have been dealing with the skin part of the psoriasis for years and years.

Phew! That's my story. I am having a hard time being understood by my co-workers. "So you have arthritis?" They ask. "But you're so young!" They say. It's frustrating. I hurt, my hands hurt, and I feel like I have no one to talk to.....anyone out there with PsA, please email me. I'd love to talk to anyone with it.

That's my story for now. Thanks for letting me share my story. I look forward to chatting with you guys sometime!

-Heidi

timba
08-06-2002, 04:00 PM
Hi, right back at ya. I kinda new to the
group myslef. I am fifty-four and developed psoriais about eighteen months ago. I think I may have psoriais but the dermatologists
are not sure what I have. Still being tested
and evaluated. There are some really educated
people on this site. I have learned so much about care and handling of this disorder through this message board. The other site I always go to is flakehq.com. check it out.
The man that runs that site is really on the ball.

web63
08-07-2002, 04:37 AM
I too have PA. I am on several NSAIDs and DMARD's.
I take Prednisone, Azulfidine, Folic Acid, Methotrexate (MTX) and just had my 4th Remicade infusion.
I am here for you. I am in the midsts of a major flare right now, and am hurting bad.
You nee to go to:
http://groups.yahoo.com/group/PsoriaticArthritis/
Open yourself a free Yahoo account, and join this group now!
You will not believe the support you get there. I felt as though I was the only person in the world with this. I am very comfortable with it now. I have learned soooo much from that group. You can see some of my posts there. I am WEB63 in the group. Go to the group, and look over some of the more recent posts. There are some very good conversations going on. You can mention that I sent you there. We just got our 1000th member there.
PLEASE stay in touch with me. Do not let this get you down. I will be here for you when ever you need it.
Good Luck,
Scott in Atlanta, GA

mrwood
08-09-2002, 01:05 PM
Timba, I went to flakhq.com and loved the site! Just wanted to say thanks for giving us another outlet to see different views on this disease.
Melanie

winter
08-11-2002, 04:21 AM
I will urge you to start a support group for people in your area who have psoriasis and of course include PA also. The National Psoriasis Foundation has manuals for those who want to start a group in their area. They do no provide financial support but using your own home, a church and an article in the local newspaper or on tv or radio can do a lot.

I started one at the repeated urging of my dermatologist and it has been great. I have met the most wonderful people. We get together and help each other with information about treatments and doctors. We are free to talk about P without embarrassment.

Face the fact that those who do not have P do not want to talk about it, hear about it nor do they realize how serious it can be. I have had P for nearly 32 years and I worked until I was 65. Sometimes I had to wear thin cotton gloves to protect my fingers as I worked on computer, typewriter, adding machine and telephone. As you have found, getting a good doctor is essential.