My HMO doc just gave me a referrel to my RA doctor who I have only seen three times. The nurse questioned me about symptoms. I had a postivie ANA, negative electropheresis, negative agglutinins a negative on the 15 panel specific lupus tests in 2003. Then in Sept . a negative ANA. The nurse asked me my symtoms. I told her the following.....
Some mornings I crawl out of bed. Joints and muscles ach and my feet hurt so bad I do not want them to touch the floor. Sores on the top and bottom of my feet as well as very painful like blisters under the skin. Two days ago a rough red type heavy rash on my legs and bad behind my knees. The rash does not itch. Also bruising type marks on arms and lower back. These symtoms along with fatigue were extensive after a trip to the desert where I did a lot of hiking in the sunshine. I had never had any problems with the sun before.
After hearing the above she suggested perhaps I should go to a dermatologist.
Does that seem reasonable? Any input would be much appreciated.
I'm so sorry you're having such a rough time!
While we can't diagnose here - none of us are MD's, I'd encourage you to visit both your rheumy and the dermatologist. Who knows what is going on! I know when I developed a rash on my face, a visit to the dermatologist resulted in a Dx of rosacea - surprised me very much, as I truly thought it was the lupus.
Be sure you let all the docs know about your trip to the desert - it could be related to that.
And stay out of the sun! Sunscreen, hats with 4" or wider brims, long sleeves and slacks.
Let us know how it goes - I hope the rash goes away quickly, and the pain even quicker.
I think that the referral to the dermatologist is in an effort to eliminate some other reasons for the rashes before testing for Lupus. Prior to my being tested for lupus, I was referred to a dermatologist who did a biopsy on my lesions. Once the biopsies were done and the results were given to my internal medicine doctor, I was then referred to a rheumatologist. It was then that the ordeal of lupus diagnosis began (which, in my case, took a year).
So, it is not unusual to be referred to a dermatologist. However, do keep a record of your symptoms, your medications, your questions and your concerns and make sure that you are listened to and that all of your issues are addressed. Be aggressive, if your doctor does not take you seriously, ask for another one. Do not let them tell you that it is in your head or that you are imagining symptoms.
I wish you the best. Remember that you are not alone and we are here to help you in any way that we can!!
Best Of Luck
Your comments are appreciated and as I struggle to cope with this journey my body is taking me on I value that you are sharing with me to make it easier.
I have started a journal with how I feel each day.
I am one of the lucky ones in that I have insurance. I can't imagine what those who do not have insurance are doing.
Thank you so VERY much,
You are more than welcome. And, yes, remember that we are all here to provide you with support, comfort, information and understanding...whenever you feel that you need it!!
Peace and Blessings
Well, I went to the dermatologist. I immediately liked her and felt comfortable. However, liking a doctor does not necessarily mean they know their stuff.
She said that my primary care doctor had given two creams that were not good for the rash/sores/blisters on my feet. Even after I explained to her that the cream (Fluocinonide) he had prescribed me had left me with barely one little blister to show her. She suggested I use that cream for the ruff, swelling rash type stuff going on in my leg-thigh area.
She said it was a fungus and prescribed Spectayole Cream. I can hardly read her writing and have not gotten the prescription filled. She said taking pills orally for this med is quicker (2 months) but hard on ones liver so I opted for the cream which she says applying 3x day for 3 months should cure the almost non existant rash/blister/sores.
She said the blood blister type thing I had was quite common (had no name for it) and said I was lucky in that they sometimes stick around for months. Mine went away after two weeks.
The blueish/brown bruise type things she said my RA should discuss with me because the take a blood workup to check out.
So I came home wondering if the stuff on my feet was truly a fungus since it had all but disappeared before my appointment with the dermatologist using the cream for prescribed by primary care doc.
Grateful for having insurance and wish everyone had it!
Any input gratefully appreciated,
Did she do a biopsy on the remaining blister (lesion)? None of the creams suggested by my dermatologist worked for me. I was given plaquenil which did work (although it took about two months to see the results).
Take the prescription to the pharmacist and ask him to explain the medication to you.
She is correct about your RA looking at the blue/brown blisters because they may be more related to an internal issue. Also, let your RA doctor know about the prescription and diagnosis from the dermatologist. Let him/her know that you do not feel that she really understood your symptoms and ask him what he thinks and what should you and he do find some answers that you are comfortable with and that will start you on treatment that is relevant!!
You are completely right about doctor's with great bedside manner do not neccessarily indicate a knowledgable doctor.
I wish you the best
Thanks for the response. I will do as you suggest. The doctor did not do a biopsy of the remaining blister. Meanwhile my feet are doing better and not near as painful.
I will take the prescription to the RA appointment with me. My personal journal continues.
Shirley, I'm sorry the drs are giving you a hard time. Just be persistent and if you think they are wrong FIND ANOTHER DR! sometimes they are just idiots, sad but true. You just have to find the one that knows what (s)he is doing and hope they are nice to boot. It took me seven years, numerous tests and a biopsy from the derm to get diagnosed a couple months ago. I had a really bad rash on my face and my whole back. They gave me a cream for it (don't remember the name at the moment and I'm at work so can't go look) and it didn't do anything but make it "move". It literally left where it was and moved somewhere else on my back. When I started the plaquenil, it took about 2 months and it was gone. I really hope they can help you get rid of whatever it is.