What tests should be done for Lupus? I had ERYTHROCYTE SEDIMENTATION RATE and a urine test which both tested high; however, my doctor says not significant (what is significant). Yet, I have all the symptons that I’ve read about. Do some doctors specialize in Lupus or auto-immune? Suggestions for next steps??? I’m very new to this and still trying to figure it out.
Thanks!
Hello, I am unavailable to read your message at this time.
TC, There is not one test that says yes you have or no you don’t have lupus. It takes a lot of tests, blood work, and talking with your doc to determine. Now as for a doc, you need a good rheumatologist. They don’t “specialize” in lupus but they are more familiar with it than most docs. Keep a journal of everything you do, eat, or whatever and discuss it all with your rheumy.
In my case I have lupus, sjogren’s syndrome, osteoarthritis, hypertension, fibromyalgia, hearing loss (I think that covers it). My gp handles the hypertension, I have an ENT for the ear and an opthalmologist for my eyes because I’m on Plaquenil. My rheumy handles all that’s left.
Keep in mind that we can all tell you our stories and about our docs but please understand lupus is different in each case. You do need a rheumy but you have to learn to talk to him. Listen to what your body says. Life does go on and over time it does get easier to know our limits and abide by them.
I hope this helps and hope you get a definite dx soon.
Love and hugs,
Ran
I work in an Ophthalmologist’s office and one day, after trying to keep all
my doctors and lab tests straight, I got the bright idea to make my own
personal chart with dividers lab, office notes and letters, just like I do
for patients in our office. It was the best thing I ever did. It keeps me
more educated and involved and I take it to every visit and can pull any
info that a doctor asks me. I have a GP who has supported me in my
diagnosis and treatment, sending me to specialist whenever needed. I have
Cardiologist, Dermatologist, Ophthalmologist, Rheumatologist, Neurologist,
Orthopedist and an ENT doc…in two different towns, 50 miles apart. For
the first couple of years I also kept a pocket calendar with notes on
symptoms that eventually evolved into a shorthand of pain and fatigue scores
for every morning and evening. Both things are helpful at every doctor’s
visit but it also helps me see patterns in my activities verses how severe
my symptoms get. The documentation also helped when I had to file for
disability, lupus can be a hard case to make.
Keep looking for a doctor that listens to you and you feel comfortable
talking to, don’t dismiss your feelings and symptoms, you are your own best
medical advocate…and sometimes that can be a full time job. ;>
Hugs,
Cammie
On 6/11/07, sandilu lupus-cpt4216@lists.careplace.com wrote:
Thanks so much for your advice. As a matter of fact yesterday I started a
chart of symptoms for Lupus, CFS, FMS. It did really help to do a first
stab at symptoms as a quick snap shot. You ideas were great. I’m feeling
very overwhelmed at the moment. I appreciate the support.
Tara
-----Original Message-----
From: Cammie [mailto:lupus-cpt4216@lists.careplace.com]
Sent: Monday, June 11, 2007 10:12 PM
To: tara@instyleinteriors.net
Subject: Re: [lupus] Tests for Lupus?
Tara,
I am SO glad that you are sounding better. Keeping track of your symptoms
and pain/fatigue scores will give you some measure of control, you can
contribute to your own health care by giving your health care team such
valuable information. Never discount your input into this process, find a
doctor who not only listens but is enthusiastic about your input. It makes
all the difference in the world. I have been to some very good competent
doctors, but the ones that have truly helped me have a better quality of
life are the ones who explain everything to me and listen to everything I
have to share with them.
My symptoms started with my feet cramping if they got cold or if I walked on
an uneven surface. Then I had a tick bite that wouldn’t heal and the doctor
treated me for Lyme disease but the joint pain and fatigue just continued
on. Then my fingers started going numb and turning white if they got cold or
if I was stressed. Off and; on low grade fevers, I swear some days my
freckles hurt. :> Then chest pain and then major back pain…If I hadn’t
kept track of all the doctors notes and my own symptoms and
pain/fatigue/anxiety scores, it might have taken even longer to find the
right diagnosis and treatment plan.
I am still learning about the FMS, I define it as when I have pain at
certain freckles being touched.;> I would love to hear if anyone has some
tips for how to deal with this little speed bump of life. Sometimes it
seems like I am doing everything right, resting, taking my meds, making the
right choices to maintain a great quality of life and then WHAM, everything
hurts and I can’t hardly get out of bed. I have to psych myself up just to
take a shower, because I know the water will hurt my freckles.
The rheumatologist that has done me the most good is actually the 3rd one I
have seen. The first one was nice and spent a lot of time with me but as
bad as I was hurting at the time, he just said that I may have lupus in the
future but was okay and didn’t need any treatment but quinine for my
cramping feet and legs. It helped some but didn’t go the distance to treat
my pain. I went to a lupus symposium and heard a doctor talk that really
impressed me so I started seeing him. He is great, very laid back but not
quite as aggressive in my treatment plan as I needed. I began seeing a new
doctor in his practice and she has really helped me. She is too smart for
my own good and received a grant for 2 years of study and will be leaving
this month so now I will go back to the original doc or try another new one
in the office. I hate breaking in new doctors…you have to train them
and their office staff to do what you need when you need it.;>:>
Just as a side note to any of you that are new to the magical world of
rotating office visits…office staff will remember you and are more
likely to go the distance with your requests if you sweeten them up. My
GP’s office loves M&M’s, especially it the afternoon when the 3:00pm slump
hits. I always tell them how much I appreciate them getting me in on short
notice when I need to and getting me samples and rx’s called in when I need
them. Access when you need it is very important with the wide variety of
ailments that we come up with.
Hugs,
Cammie
On 6/12/07, tcampbell lupus-cpt4216@lists.careplace.com wrote: