Hello I was diagnosed with Reynauds back in August and then the doc did further testing and I had a postive ANA w/a homogenous pattern. I've been waiting to get into the rheumy and since then my doc has run more tests. She repeated the ANA and it came back positive once again w/a homogenous pattern and I had her run a series of blood work for Lupus and they all show signs of inflammation. She doesn't know where the inflammation is coming from and isn't convinced that its Lupus even though I have severe itching that has woken me up out of a sound sleep, extreme fatigue, rashes that appear for no reason, hands that hurt-turn blue and they hurt to bend, no other joints are hurting me, sometimes I feel lethargic, and now lately I have severe headaches. I FINALLY see the specialist on Tuesday, my questions are what do I ask or say to the doctor? I am frustrated and tired of this!
Hi Mia,
Make sure your doctor is sending all the test to your rheumie, your rheumie can confirm you have lupus. Just tell your rheumie what you told us here. Write it down to take with you, and anything else that you pops into your head now, because if you're like me once you're there it will all slip from your mind. I go to my rheumie for the first time since he diagnosed me as lupus, and now that the initial shock wore off, I have a list of things and observations to go over.
I'm sorry that you are frustrated, and this surely doesn't help you. All I can say is that I understand what you feel, I think I have Raynauld's as well, now and I have this on my list for my rheumie too : )
Hugs, Trisha
Hi Mia,
First of all i'd join the raynauds group on the main page if you have'nt already...a i'm not sure if you joined it and raynauds does cause severe pain to the fingers plus have you been told what degree you have this is it primary or seconday?
Regarding all these tests with ANA's keep showing postive is an high possibility of Lupus plus having skin issues, you also need to see a Dermo for this so bloods can be tested on what you've got in skin trouble and sometimes biopsies are needed to confirm things and also for your raynauds besides.
Like Trisha said you need all you tests and confirmation on them either sending through to him or your GP gives you print off to take with you, as my GP gives me print off of letters and if you have any skin trouble now exposing itself take pictures also for the rheumo to view.
Plus also write things down which have been happening and questions you need to ask and any that come to mind...Trisha as about covered the main facts for seeing a rheumo for the first time.
Love Terri xxx
Hi Mia
That's great that you have hard copies, I have it on my list to discuss to get my copies so I can start my records, for pursuing disability.
Thanks, it is what it is. : )
Trisha
Mia said:
Hi
I forgot to mention that I got a hard copy of all of my blood work to give the rheumie. Sorry to hear that you might have Reynauds, that is not fun! ;(
Dear Mia,
Please join our Raynaud's group, just click on groups at the top of the page and you will find us there. There is some great info there, and many to talk to who also suffer this disease. I am also one of them, along with nearly 30 others! Just the slight change in the weather makes me want to get my gloves out along with my heavy wool socks, and cuddle duds!
Terri is right about keeping a running list, of symptoms and questions, my GP now just tapes the list into his records, my Rheumatologist gives me a questionnaire to complete and I copy those things right onto that sheet, I also have to give him a list of supplements and meds each time, some keep a list in their purse, or even on their smart phones.
Wishing you well, see you on the Raynaud's site!
Hugs,
SK