PDA

View Full Version : Hello...New to Lupus



lulu1125
08-13-2012, 08:40 PM
For many years I experienced many symptoms but did not know they were related to SLE. Recently I had a biopsy of skin and tissue from my arm and pathology results strongly favor Lupus Panniculits and showed pre cancerous cells so the pathologist questioned Subcutaneous panniculits like T cell Lymphoma ( very rare cancer). I'm being refered to a specialist at Yale New Haven Hospital CT, but not sure when I'll be able to get an appointment probably not till Jan 2013. Also have an older half sister who was just diagnosed with lupus in October 2012.

Feel lost and confused!!!

tgal
08-13-2012, 09:02 PM
Sorry that all of this is happening to you. I know it is a rough time but try not to panic. I would suggest calling and getting on the cancellation list for the Dr that you need to see. I have done that and been in to see tem within a week instead of 6 months. It works sometimes and sometimes it doesn't but it is worth a try.

Just know that you are one of us now and we will be here with you as you travel down this path

steve.b
08-14-2012, 04:28 AM
hi lulu,
sorry you are going through all of this at present.

please take the time to read a few of our older posts.
they are our personal experiences with lupus.
a great place to start is the "stickys".
they have information that others believe to be valuable.

also use the search option at the top of the page.

please ask questions, we are here to help.

lulu1125
08-14-2012, 07:31 AM
Thanks Mari that's a great idea.

jmail
08-14-2012, 07:32 AM
Hey there lulu1125! Another welome to the whl forum. As steve.b suggests, read around here a little and familiarize yourself with the site and its info. Vent if you want to, everyone here understands and can relate. Have your sister come on over and have a look-see.

My family went thru the New Haven area on our way to Mystic, CT and Plymouth, MA last spring. We didn't have a lot of time in that area, and weren't able to do any site-seeing there, but we did see the exit off of I-95 for Yale...

lulu1125
08-14-2012, 09:48 AM
Hey Jmail,

Thanks for welcoming me to how I see WE HAVE LUPUS, a great big family. Like many have stated this is all new to me and hard to explain to friends and family. The scariest part is not knowing. I'm at work but can't focus on anything because I feel up in the air. First appointment with the rheumotologist is not until Sept 6th and I know with all the test that have to be done I won't have any answer any time soon. Good things are happening though such as just got approved for health insurance through Connecticut Pre Existing and this was one of the obstacles to getting diagnosed sooner, but thank GOD got over that hump. Crazy enough I'm about 10 minutes from Mystic CT..
I will have my sister visit the site hopefully she'll join us.

jmail
08-14-2012, 04:45 PM
We overnighted in Mystic, and went to the aquarium there both on the way to, and on the way from Plymouth. Since we went later in the afternoon the 1st day, they just had us sign our tickets, and we got back in the 2nd day to see more. We didn't get to go into the "Olde Harbour Towne", or whatever they call it though. If we ever get enough time to go see Maine (and New Hampshire and Vermont), we plan on stopping in Mystic again...

kim,l
08-19-2012, 05:36 PM
hello lulu i am so sorry you are going through hard time. and it is going to take such a long time for appointments. i agree with mari cancellation list is the way to go i have done this and got earlier appointments. by all means invite your sister to have a look at site it is always helpful to have suppport and we are here for you both hugs kim

magistramarla
08-22-2012, 03:32 PM
Hi Lulu,
Welcome to WHL. The T-cells in the biopsy may not be that scary. Before I had any dx of an AI issue, I had recurring sores. I bugged my PCP until she biopsied one. Then she freaked out because the lab found T-cells. She thought that it might be a papiloma that could lead to lymphoma down the road.
Later, after I was dx'd with autoimmune issues, a rheumy told me that the sores were associated with the scalp psoriasis and psoriatic arthritis.
My newest rheumy scoffs at all of it, and says that I don't have psoriasis, but has never looked at the sores on my scalp or on my body.
Hang in there - I hope you get some answers.
Hugs,
Marla