View Full Version : Almost to Dx - Treated as we go

01-03-2013, 11:21 AM
Hi! My name is Valerie and I'm 37 years old. This time last year I was extremely ill (lost 10 pounds in one month, night sweats, bizarre swelling, pain, no energy at all, fevers, swollen lymph nodes, hair loss) and finally, after nearly a dozen different appointments, an after hours nurse practitioner suspected my thyroid and checked my ANA. I've been under the watch of an oncologist for the continued lymph node swelling and a rheumatologist for a year now. Rheum said all points to lupus but doesn't want to rush into a dx for negative impact on my job, insurance, etc. :)

Have a dual-pattern positive ana. Most of my bloodwork (sed, dsdna, c4, c3, anti-lo, anti-ro, etc) have come back normal. At the end of summer I had a low positive anti-smith and rnp. The onc always says I'm a bit anemic. I get eye pain and swelling often and the rhem rx prednisone. A couple months ago I started getting deep aching in my hips and ankles, enough to make me limp and extreme stiffness when I sat/lied still too long. Rhem rx meloxicam 7.5 to try out. Took the edge off but still too much pain and started going to my wrists and fingers. A week ago I begged him to go up to 15mg. It's killing my stomach and maybe it's my imagination, but I'm hurting more now than I was. Not much swelling in my joints but omg it aches like an ice-covered migraine down deep in my bones. I feel like such a hypochondriac so I don't want to call him for anything else until I see him in march for my next appointment.

So that's my nutshell!

01-03-2013, 04:06 PM
Hi Valerie! Welcome to our community! I too am waiting for a firm diagnosis. Right now all I have confirmed is Hashimoto's -- autoimmune thyroid disease and a positive ANA. I have peripheral neuropathy, unexplained seizure disorder, eztreme joint pain, etc., but no definitive explanation for any of it other than the Hashi's. It can be a long road to diagnosis, but you will find hope and support here among others who have traveled or are traveling the same road.

01-03-2013, 05:05 PM
Thanks! I've been browsing this forum for months for reliable info! Thanks for such a great support community! It's such a relief to find a place to talk about things with people who understand where I'm coming from!

01-03-2013, 05:05 PM
Hi and welcome to WHL!

Doesn't want to rush into a diagnosis and get you on meds to help you start feeling better? I love Rhuemys! While I am not a doctor and we are here to support you, I have to ask if you have considered finding a new Rhuemy? Many of us have had to go to several before we find one that actually does their job! Don't be afraid of them! They work for you! You hired them, you can fire them just as easily!!!

Anyway, I look forward to getting to know you and once again, welcome to our family

01-03-2013, 05:41 PM
Well, he's really good about offering me meds but I'm careful about getting on too many of them... and I HATE asking for them! right now I'm on wellbutrin, luvox, meloxicam/mobic, prednisone when i need it, otc pain meds and acid reducers (bc of the mobic), fetrin (anemia), and tizanidine (muscle relaxer to help me sleep). I think I'm leery bc my pc made me feel like a mental patient when none of the antidepressants/anti anxiety meds he rx worked right. (Most of them were from 1970's not to mention looking back I think it was less "depression" and more "fatigue" I was dealing with.) HE'S the dr I want to fire. asap! I insisted he refer me to someone who could figure out what on earth was wrong with me. (GRRR)

Thanks for the warm welcome! :)

01-03-2013, 07:58 PM
hi valarie,
i also have had to come to terms with taking medications.....
before i was diagnosed with lupus, i rarely took any meds.
i only went to see a doctor when i needed a medical check for work.

now i am on a handful of meds twice a day.
some of them are chemical poisons.

we do not like meds.....
but hate lupus more.
the meds help us....
so we take them religously.

also please remember that we are all inderviduals.
not all drugs work the same on everyone.
i have used several different depression medications....
to find the correct mix for me, and today i am seeing the doctor to change it yet again.
after being on a good mix for 2 1/2 years, my body is reacting differently now.....
so i need to change to find a new mix that will work with my changing body.

if it was a car...... and it was broken
you would take it to a mechanic
if the first mechanic did not know how to fix it......
you would go to someone else.
your body is more important than a car.......
so take it to someone who wil fix it properly.

btw hello and welcome.

01-04-2013, 09:13 AM
Thanks, Steve! All excellent points!