Comments on: Blood Tests for Diagnosing and Measuring Lupus

By: ida

ida — Sun, 30 Aug 2020 23:13:48 +0000

In reply to Janet. Actually you only need 4 of the 12

By: Jeff

Jeff — Sun, 29 Dec 2019 22:27:59 +0000

In reply to Esmee La Fleur. A heartfelt, I’m sorry. My daughters lupus situation parallels many of these experiences. I hope you have loving caregivers and a support system outside the medical field.

By: Ms. Chocolate

Ms. Chocolate — Mon, 04 Nov 2019 23:31:52 +0000

I started having issues when I was in my early teens. These were listed as growing pains or my wanting attention. During my late teens, I spent months in the hospital, yet no type of diagnose was made (spend more that 2 days in a hospital now days and you will be labeled with all types of things). As the years moved, I spent more and more time in doctors’ offices & hospitals. More things were noted, but testing was limited. From what I gatherer, if the ANA is negative, additional test are not performed. A couple of years back, I went to a new Rhem. Due do my past (and prompt from my PCP), the whole range of testing was performed.
OMG, I am well into my 60’s and they have discovered I have positive ENA readings. I say discovered because the docs act like i’ve not suggested this for some 50 years.
They want be to take a cabinet full of medications, and are surprise that i refused.
Over the years, I have come up with ways to deal with my pains, rashes, tiredness, and other issues.
To the doctor who said i was faking, in a effort to collect disability – “I’m of age now!”

By: Alesa Andrews

Alesa Andrews — Sun, 20 Oct 2019 01:55:16 +0000

I have a permanent blood clot. When I found out I had this I tested positive for the Lupus Anticoagulant. I know this does not mean Lupus. Twelve weeks later I tested Negative. I felt better at the time. I have Discoid lesions on my scalp and had Anemia. My arms are numbing now. I feel awful, I feel better. My white cells have spiked and I was hospitalized.
Tongue sores and other markers. My sister passed from Scleroderma at 44. Mom had Rheumatoid. Daughter has Graves. I had ITP and a splenectomy in my 20s. I’m 68 now. Four months to see a Rheumatologist. I spend my life quite confused.

By: Karen

Karen — Sat, 19 Oct 2019 17:13:46 +0000

My mother had lupus, diagnosed finally after years of suffering. My brother has lupus and it’s really taking a toll on his body. I have some of the same symptoms but was told by 2 doctors that there is no definitive answers at this point. How likely is it that I could have lupus also?

By: Janet

Janet — Wed, 16 Oct 2019 10:42:21 +0000

In reply to Mary. I’m sorry for the tough time your going through. I was first misdiagnosed with MS. Ms and lupus can look alike especially if lupus is attacking your central immune system. My point is there is a criteria of 11 that a patient has to demonstrate before receiving a diagnosis of lupus. I also found out through credible research that primary doctors are not always well informed of lupus. I would keep a log of your symptoms. My rheumatologist has me take pictures of rashes or swollen joints. Sometimes we are at our sickest when we don’t have a app and when we do we recover. It’s a frustrating disease. I wish you the best of luck at your future app.

By: Rachel

Rachel — Thu, 03 Oct 2019 19:57:53 +0000

I have sle lupus and alot of other autoimmune dieseaes

By: Donna Wike

Donna Wike — Mon, 16 Sep 2019 19:49:20 +0000

Constant battle to fight! Last lupus flare for me was attacking the heart. Finally got fluid under control yet now fighting kidney and liver from the meds given for heart! I just continue to go daily with faith in our great God!

By: Kerry

Kerry — Wed, 11 Sep 2019 16:25:34 +0000

In reply to Esmee La Fleur. I was in the hospital with pericarditis and all the markers showed up in my bloodwork, but had to wait 6 months for an appointment with rheumatologist. The bloodwork done at rheumatologist only showed positive ANA, high ACE and moderate positive RNA Polymerase. Waiting to see what rheumatologist says about test results. Appointment is not until October.

By: Esmee La Fleur

Esmee La Fleur — Sat, 07 Sep 2019 17:23:37 +0000

In reply to Mary. I have waited months to see specialists as well and after only 10 minutes of trying to descibe my symptom history they cut me off and want to run bloodwork that, until recently, all came back normal. This, they concluded nothing was wrong in spite of my 50 different symptoms involve every system of my body. It is totally ridiculous! After 20+ years of being sick and finding no answers, my bloodwork is FINALLY displaying abnormalities and the doctors are FINALLY paying attention and trying to help me. But I had to get to the point were I'm half-dead for this to happen.