Totally new at this. SED question.

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New Member

Date Joined Jul 2014
Total Posts : 2
   Posted 7/16/2014 5:48 PM (GMT -6)   
I am posting under Lupus, because that is what they are "leaning towards" - but I have no diagnosis and have just embarked on this sucky journey. cry
I have a long list of symptoms (*listed below) and we started with blood tests- (RH Factor Neg) which first one had my SED at 65- was at 101- they started screening for all the obvious cancers (even though GP said he suspected Lupus or MS with my symptoms, but insurance wants it in this order) we haven't even gotten the pap results back yet and they have called me to tell me that in 7 days my SED rate went from 101 to 19. (Which I believe takes cancer off the table, yes? )The difference I can tell is that I was having a bad week last week- this week I am feeling better. But But I have been having increasing issues in the last 3 years since my twins were born, and I knw I go in cycles.
Has anyone had quickly fluctuating SED rates like that? I understand they can spike very quicky, but drop that quickly?

*Tailbone humming
cellphone vibration feeling every 30-90 seconds.
Modeled face
"Butterfly" rash
Rash on hands
Gets worse with stress and with sun exposure
Not fever, but HOT from the inside out
Joint pain
Muscle pain
Pain in elbows
interior of both elbows- not continuous, but always simultaneous
Pelvis/hip pain
Gastrointestinal issues
Mild IBS
Acid reflux
Ulcer pain
Non digesting veg/fruit
Pain in lower intestines
Hungry AFTER eating (My brain sends me starving signals about 30 min. after eating a full meal)
Low salavatory rate
Itchy skin
specifically before bed-

Veteran Member

Date Joined May 2005
Total Posts : 7725
   Posted 7/16/2014 8:06 PM (GMT -6)   
Have you checked out the Lupus organization and the 11 main symptoms used in diagnosing Lupus? Generally it's diagnosed by having 4 of 11 symptoms.

SED rate is basically a measure of inflammation, not really an indicator of a specific disease. Generally the higher the SED rate the worse you feel. It can drop quickly if your inflammation goes away...

What kind of Dr is running your investigation? Generally you want a rheumy to make a final Lupus dx - they are the experts in Lupus and many other auto-immune diseases.

Let us know how it goes!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

New Member

Date Joined Jul 2014
Total Posts : 2
   Posted 7/16/2014 8:46 PM (GMT -6)   
As I said, I am just starting on this- I have been having worsening symptoms for 3 years, but have just started looking for answers as I just got medical insurance- The insurance insists on a certain order to testing before they will approve a specialist like a rheumatologist.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 7/16/2014 9:35 PM (GMT -6)   
Are you protecting yourself from sun exposure? There are other sources of UV rays too, fluorescent lighting, and halogen lights.
My bedroom is UV light proofed. I use blackout curtains and LED lighting.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 7/16/2014 11:26 PM (GMT -6)   
Lynnwood and Joy both have given you very good advice. Not much that I can add really other than when you have a positive SED Rate or CRP and do not have a diagnosis of lupus or auto immune disease, it doesn't mean that you'll get one.m OT LUPU

It's common for people with a common cold to have inflammation in their bodies and a SED Rate or CRP to be positive. The same will apply to positive ANA's you can be sick and have a positive one and not have an auto immune disease.

Please, feel free to come ask some questions, I'm sure someone will have an answer for you. I wanted to ay welcome to the forum and I hope that you get feeling well again really soon.

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.
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