Introduction - long and sort of boring!
Good Morning everybody -
I have been splattering posts all over here this morning. I just signed up yesterday, and I'm already a "not so newbie." So I thought I would post an "official" introduction, then maybe get out of bed. :lol: ( I LOVE my laptop and wireless network.)
As I posted in the "newbie" forum I have a "weird" presentation of lupus, at least for now. I am guessing more of the typical symptoms will show up as it progresses. It was hard to pin down that it was lupus until the anti-ds DNA test was done, then the rheumatologist seemed pretty sure that I have lupus.
My whole medical ordeal began on March 27, up until then I was healthy as a horse. On that day I started getting numb in my right foot. Over three days most of my lower body was numb. On the 29th this was diagnosed as transverse myelitis, an immune system attack on the spine. It can have many causes, and one of the most common is MS. So I spent most of April getting different tests for MS, but they were all negative.
The ANA was high however, so it was suggested that I see a rheum. There are only two in my town, and one of them looked at my record and said it was too weird for him, I would have to see a specialist in Seattle. It took until April 28 to get an appointment down there, so by then the DNA test was in, and from my own interent research I learned that it probably indicated lupus.
I'm glad that I did my own research, otherwise I would have been totally freaked out. I still didn't think it could lupus, because I had none of the "normal" symptoms. To try to make a long story short, since then I have learned that I have APS (Antiphospholipid Syndrome) which many lupies have, I guess. It is thought that a clot caused by APS can travel to the spine and cause TM, so that is likely what happened to me.
I am luck that my TM was mild, many people who get it are paralized, some for life. I am just numb or tingly from about the waist down, but don't have any trouble walking. The symptoms were starting to get better, but just two days ago started getting worse again... You all know the roller coaster ride of better/worse/better/worse. I think that stress triggered it, so I am trying hard to avoid that...
Anyway, besides the "medical crap" as I call it - here's some info about me: I'm 45, and live in NW Washington State. Single, no kids, but a great BF who just moved in with me the week before I got sick! I am an architect, and one of three owners of a very busy firm (yeah, low stress, right!). I love outdoor activities like gardening, kayaking, running, camping and backpacking and am determined to keep on doing those things, with my numb legs and whatever energy I have left. One thing I'm learning is not to waste my energy on things that are not important to me!
I better post this before the laptop runs out of batteries - I hope I didn't bore anyone to death, but I'm really happy to find a community where I can talk about all this "medical crap" to people who might understand. I look forward to getting to know you all!
I've read and replied (I think) to some of your other posts. I am happy that the TM did not cause permanent or disabling damage. I am happy to hear that you will continue to participate in physical activity (especially the Lupus Marathon!) and that you are educating yourself and actively participating in your health care.
Keep us posted about the marathon....I am rooting for both of you :lol:
Peace and Blessings