Mom Recently Diagnosed

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UserANONYMOUS
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Date Joined May 2011
Total Posts : 4497
   Posted 11/19/2014 12:42 PM (GMT -6)   
Hello Everyone,

My mother was recently diagnosed with Lupus… I’m a bit scared and confused so I thought I’d post here to get some insight.

Approx 5 years ago, my mom fell sick but our GP was not available. She went to another doc who ran some tests and told her that she had Lupus. He did gave her some meds (not sure what they were). After a couple of weeks, my mom visited our GP. She told him what happened. He told her that she doesn’t have Lupus, she just has very bad Rheumatoid Arthritis and Osteoarthritis. He said that the symptoms are similar for both hence the mix up.

My mom had been suffering with arthritis for many years, probably since I was a toddler. She also had sensitive skin. She cannot go out in the sun as she feels her skin on fire and it turns discolored.

She has lots of dizzy spells and breathing problems and get tired fast.

More than a month ago, she visited a doctor to do full tests. She told him she wants to be tested for everything… He did full blood work. The results came back last week, and the test for Lupus came back positive. The doc told her to continue with PT and also continue using the meds she’s on (pain meds for arthritis, pressure meds, meds for dizziness, etc.), and if she feels worst anytime, she can come in. He didn’t give her anything additional or recommend anything else.

I’m confused - she was diagnosed a few years ago, but then our GP said no…
Now, the test came positive. Does this mean she may have had it all those years?

I’m scared… When she told me the test came back positive, I didn’t ask her any other questions. I just listened. I didn’t know to react.
My father passed away just over a year ago due to heart failure. Just wondering if my mom will be okay?

Any advice please? What can I do to help her?

UA
Moderator - Bipolar

Depression, Borderline Personality Disorder.
Chronic Pain - Cervical Kyphosis, Cervical Spondylosis, Thoracic Scoliosis.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 11/19/2014 2:17 PM (GMT -6)   
Sure, she may have had Lupus all this time - but she may not have had. I'm not sure it really matters either way.

What kind of doctor did the "full tests"? A GP or a rheumatologist or what?

She should be seeing a rheumatologist. A GP is not educated in the specifics of arthritis to the extent that a rhuemy is, and the rheumy is also the specialist to see if there is any question of Lupus.

Cheers,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

UserANONYMOUS
Forum Moderator


Date Joined May 2011
Total Posts : 4497
   Posted 11/24/2014 7:46 AM (GMT -6)   
Hi Lynnwood,

A GP did the full tests. However, she saw the Rheumatologist at the clinic last week Thursday and showed him the results. He reviewed it and stated that the results shows Lupus.

She has another clinic app today with the Rheumatologist.

UA
Moderator - Bipolar

Depression, Borderline Personality Disorder.
Chronic Pain - Cervical Kyphosis, Cervical Spondylosis, Thoracic Scoliosis.

Barbara Lee
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Date Joined Sep 2003
Total Posts : 2889
   Posted 11/25/2014 12:27 AM (GMT -6)   
Hey UA:

I just wanted to let you know that I'm sorry that your Mom has been DX'd with lupus. I'm sure you're very scared about it. Please know that we're here for you to answer any questions and offer any advice that we may have.

I know reading about lupus can really frighten folks, but lupus is so different between us all. Some do so well and others not so. Myself, as you know, haven't done well, however, I know several friends who have.

The best thing you can do for your Mom is to be there to help her, make sure she gets plenty of rest, eats well, gets some mild exercise, and help her keep her stress levels low. Listen to her when she needs to vent and just support. Having a good support system is a HUGE deal. Trust me I know, I've not had that and I'm certain it's partly why I"m not doing so well.

If I can be of any help in anyway, let me know.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

C/Z Fan
New Member


Date Joined Apr 2011
Total Posts : 19
   Posted 11/25/2014 9:32 AM (GMT -6)   
Hi UA,

So sorry for your mom. Don't panic because as Barbara Lee said, it's different in each person. I was diagnosed 25 years ago and have had only a few bad episodes. When I first was diagnosed at 22, I was so nervous. I went to the library and read all sorts of books and they scared me b/c the authors had it bad. I soon learned that I know my body better than any doctor. Your mom has to pay attention to her body and know when to rest. For me the key is take my meds, get lots of rest, keep stress low and don't push it. I've been able to control my lupus with plaquenil and intermittent stints on prednisone and a good rheumetologist that listens to me. Good luck to your mom.

UserANONYMOUS
Forum Moderator


Date Joined May 2011
Total Posts : 4497
   Posted 11/26/2014 11:38 AM (GMT -6)   
Thanks Barbs and C/Z Fan.

Reading about it online was a bit scary.

I'm not good at being supportive. Expressing feelings is a bit tough for me. I guess this is something I will have to learn so I can help her.

She went for some blood test yesterday by the lab. She did not look well when she came back.
Today, she is suppose to go for a bone density test.

UA
Moderator - Bipolar

Depression, Borderline Personality Disorder.
Chronic Pain - Cervical Kyphosis, Cervical Spondylosis, Thoracic Scoliosis.
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