Diagnosis Confirmed!

[tsharrard]

 I was lucky and got a call to see the physical Medicine doctor early because of a cancellation. He did a thorough exam and the final result was Fibromyalgia and sjogrens. He did explain that I possibly had one foot in the door for an autoimmune disease, but that fibro will not turn into an autoimmune disease, that it will always be there along with the autoimmune disease. He also explained to me that he treats the patient not the blood work results. That his goal is to improve my quality of life. He has encouraged me to read and educate myself as much as possible on fibromyalgia. I really felt like he listened to me and didnt treat me like I was ust a depressed hypochondriac. I did develop a rash across my cheeks and bridge of my nose but he didnt think it was a Lupus rash. He felt it may be rosacea. The odd thing is that it came on suddenly,, one day it just appeared. It wasnt a rash that started out small and spread. I was wondering what the difference is between rosacea and the butterfly rash seen in lupus. I also have developed a slight contortion of my hand on and off and at times I am having trouble grasping things. It is wierd. I hand will like draw up or shake and jerk. tighten up and stop tighten up and then stop again. anyone ever have this happen?

[peacefulstorm]

I found some pictures for you to look at and see the differance or help u to determine what you had and see for yourself.

Lupus Image: http://library.med.utah.edu/WebPath/jpeg3/SKIN009.jpg
Rosacea Image : http://www.consumersresearchcncl.org/Healthcare/Dermatologists/images/rosacea.jpg

As far as the hands go, I have those symptoms from time to time and I think it goes with the SjS.  Good news its not all the time for most people and hopefully for you it will come and go.  I am so very pleased to hear that you have a very compassionate doctor that treats YOU! That is so hard to find, congrats!

[lynnmarie219]

Hi Tsharrard!

I'm glad that you found such a great doc. He sounds like a dream come true in that he listens to you and is willing to treat the symptoms you have. Hold on to him!

Ive also been confused about what the difference is between the lupus rash and rosacea. I have been diagnosed for years with rosacea and have it pretty well under control at this point! The times it still really acts up is in the heat or when I feel hot (which can be quite often) .


You also mentioned that the doc said his goal was to improve your quality of life. Has he shared any of his proposed treatment plan ideas with you yet? I hope you get some relief soon....keep us posted on how you are doing! 

[Pooh]

I'll second and third that Teresa.  Hang on to that doctor.  Clone him if you can.   

Roscea was the first gift Sjogren's gave me after I was dx'd.  Cleaned my house one day and when I looked in the mirror, my face was red as fire with a rash all over it.  It looked like a halloween mask.  Nothing helped it until I saw a dermatologist.  He put me on Minocin for about a year and I've never had a problem since.

Good luck with it. 

Pooh

[salsen]

My dermatologist said my face redness could be either roscea or it could be from the SJS.  Either way the treatment would be the same.  He stressed using a moisturizing cream with uv protection on a daily basis.  If  that didn't work the next step would be a prescription ointment.  Luckily it has helped using over the counter Aveeno with uv protection.  It goes on every night after my shower.

[pudmott]

That doc definately sounds like a keeper. He even sounds human and like he has a persoanlity. Tell he needs to donate to gene research. we need more like that

Pud

[Sjenny]

I'm so glad you found a good doctor.  Now you can get the help you need.

Sue