View Full Version : Hi I am newly diag

09-05-2011, 10:02 PM
I have been going through this since 1999with a few years off. For good behavior. HEE HEE this last episode I started in 2007 and eventually it has come to a climax and I have been given adiag of Lupus and possible Scleraderma, and. Either myasthenia Gravis or polymasthesis. Just the3of them which the Drs have claimed is the factor why it has been so difficult to diag. Currently I am heading into a free time as my flare up started to drop off about three weeks ago. I am off on holidays next week and my dr says that he will see me in my next flare up when I get back as I will be going to a sunny climate. But I believe I still have to live life. They haven't given me specific drugs yet especially as my rash, fatigue, muscle weakness and fluro light reaction is subsiding. Still got some double vision and heat intolerance and sweating etc. My muscles have weakened so much in my arms I can't lift the kettle to pour hot water for coffee. My right shoulder has dropped and I do hope that improves as my shoulder straps on clothes keep slipping off. I started painting in 2007 and really enjoy that www.harmonymanor.com also my husband takes wildflower pictures here in western Australia.

09-05-2011, 10:22 PM
Welcome to WHL. I also have a mixture of several AI diseases. My rheumy called it Mixed Connective Tissue Disease.
You can learn a lot about Lupus and other AI diseases by looking through the threads and stickys that interest you.
Enjoy your holiday, but be careful in the heat and sun. Many of us have problems with UV rays. Use lots of sunscreen and wear protective clothing.
Please be sure to check in with us when you get back.

09-05-2011, 10:35 PM
hi desley,
welcome to our cyber family.
there is quite a few of us west aussies that frequent here.

09-05-2011, 10:40 PM
i just had a look at your web site.
i am impressed with your work.
my wife also paints.
i am not so lucky with the abilities. lol

09-05-2011, 10:41 PM
Thanks Maria
Yes I do get effected by heat and fluro lights. I find it like one minute being superman and the next being next to some cryptonite as my skin burns and I lose all energy. I will do my best to stay out but I have three grand children there and that is the carrot at the end of the string.

09-05-2011, 10:43 PM
Thanks Steve I used to be down at Pinjarra as I am just finishing on the Council at Murray.

09-06-2011, 12:47 AM
I want to officially welcome you to WHL. I am so glad you finally made it LOL

09-06-2011, 12:53 AM
I started painting in 2007 and really enjoy that www.harmonymanor.com (http://www.harmonymanor.com) also my husband takes wildflower pictures here in western Australia.

Hi Desley,

I checked out your paintings, and I have to say, they are really beautiful. You have an amazing talent.

Welcome to WHL!


09-06-2011, 05:11 AM
I feel very welcome !

11-21-2011, 12:19 AM
Off for an EMG tomorrow, had skin biopsy and get those results on Thursday. Neuro visit again in a few weeks. Rumi in a few weeks so should get lots of news just before Xmas.