list for doctor

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

lilly120
New Member


Date Joined Aug 2012
Total Posts : 6
   Posted 3/11/2013 1:23 PM (GMT -6)   
Hi All!

I have been putting off going back to a (any) doctor but finally made an appointment w a new Rheumy. I have heard she is very good. After accidental exposure to sunlight through car window - I have been feeling really bad on top of rashes on that side of my face.

Im worried I will leave with no treatment again. I wanted to post this list I created for her and get your two cents on what I should expect.

Thanks so much in advance! I'm so reluctant to get no where again!

extreme rashes from sun - malar rash - lacey rash throughout body, mouth ulcers often, disk shaped non scaring rashes, difficulty breathing, fatigue, joint pain - knees, feet (difficulty walking up/down stairs), costochondritis (most of the time), extreme allergies to food and medications, and chemicals (chlorine), extreme dizziness, feet turn purple

very sick after sun exposure and florescent lights - intense rashes

positive subacute lupus rash biopsy
positive lupus band test on wrist (non exposed, no rash site)

negative ANA and other lupus related test (I think)

Gilly

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 3/11/2013 3:24 PM (GMT -6)   
Interesting, I had never heard of a Lupus Band Test -- I looked it up and it says it's really hard to read accurately.

Sounds like a good list, but when I compare it to the "4 of 11" list where any 4 of 11 symptoms indicates lupus, I'm not sure that would be your dx. (See 'diagnosing lupus' link below.) Happily a good rheumy will be able to help you out!

Other things to consider - Do you ever have fevers? Is the joint pain after any particular activities or at random? (Is it worse after sun exposure?) Is anything ever warm, red, or swollen?

Best wishes!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

lilly120
New Member


Date Joined Aug 2012
Total Posts : 6
   Posted 3/11/2013 8:03 PM (GMT -6)   
Hi, no the joint pain is generally just when I am not feeling well. Very stiff, hard to get up and down stairs, my small joints in hands and feet as well. Yes, I have low grade fevers, and hair loss when I am sick.

As far as 4 out of 11 - I have malar rash (most consistent symptom), sun related rashes, mouth sores, joint pain without swelling, I had one unexplained episode of seizures when I was 29 which started all the health problems.

I have such a bad time with skin rashes, and the sun - besides positive biopsies, (the mt sinai doc on last one said it was a connective tissue disease based on IgG and IgM deposits and high mucin etc.).

There is something really terrible that goes on directly related to sun - and my face and vneck area are worst- my dermatologist keeps referring me to Rheumatologist but they want positive blood tests and Im stuck.

Could Lyme or Yeast cause all of this?

Worthit
Regular Member


Date Joined Nov 2011
Total Posts : 212
   Posted 3/11/2013 10:37 PM (GMT -6)   
I cant give you any advice but I hope you've found the Rheumy that will work for you! I wasn't pleased with mine and he's the only one I had been to. Anyway good luck to you!
Alone we can do so little, together we can do so much
Call me Jimmy;-)

Cirrhosis,osteoarthritis,back,knee,hip, extreme flat foot,falling arches, hammertoe,out-toing and bone spurs(will be requiring major foot surgery on both feet). Had kidney tumor removed.Neuropathy- deteriating nerves,Osteomyelitis and Insomnia Hoping to be diagnosed with a good sense of humor ;-)

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 3/11/2013 11:54 PM (GMT -6)   
Is there another rheumy you can see?

Check with the local chapter of www.lupus.org to see which local Drs are on the advisory board -- these are the Drs interested in lupus. I say that because there are rheumies who aren't that informed about lupus and they are usually the ones who rely strictly on blood tests.

The national & international Lupus organizations, the rheumy society, and the CDC all say you can have 4 or more of the 11 symptoms (ie without a positive ANA blood test) and therefore be diagnosed with lupus. And there are also a lot of rheumies who believe that when a diagnosis is not clear cut that trying the lupus medications and seeing what happens is an aid to final diagnosis.

Hope you can find help soon,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/12/2013 4:58 PM (GMT -6)   
To help your sun issues make sure to find some sun protective clothing. I buy all of mine at Coolibar.com. They make very soft clothes.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 25, 2018 4:19 AM (GMT -6)
There are a total of 3,006,367 posts in 329,347 threads.
View Active Threads


Who's Online
This forum has 161831 registered members. Please welcome our newest member, gsdjksd07.
142 Guest(s), 0 Registered Member(s) are currently online.  Details