Author Topic: lupus screening quiz  (Read 33006 times)

Carolina

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Re: lupus screening quiz
« Reply #30 on: January 19, 2015, 09:52:20 AM »
I've had doctors test and test me for Lupus, since I was 22.  I don't have it, but I often appear to have it.

As far as I can tell, the treatment for Lupus as an autoimmune condition is NOT different from the treatment for other autoimmune conditions.

The biggest things particularly related to Lupus are kidney and lung involvement and usually then  require treatment by specialists to deal with the damage done by the autoimmune autoantibodies attacking those organs.

My niece died after suffering for 16 years with Lupus which never went into remission.  The last 5 years she was on dialysis because her kidneys had completely stopped functioning.

She died because her body could no longer handle the dialysis necessary for her to live.

I have known many people who have been extraordinarily successful while diagnosed with Lupus (Dean of the School of Education, successful attorney, etc.) and others who have not.

The degree of difficulty for surviving autoimmune/immune mediated conditions, I think, is the amount of damage to systems and organs that occurs.  Having an autoimmune/immune mediate condition, in and of itself, is not  as important as how much damage the condition is doing.

I am fortunate that the biggest damage that has been done for me is my profound neuropathy (and perhaps my arterial lining damage which causes my CAD).   No doctor will state clearly that my Immune Mediated condition destroyed the nerves in my legs and causes my Small Fiber Neuropathy, but in the absence of any other determined cause, and in the clear presence of Immune Mediated problems and a diagnosed condition, I have to say that I'm sure.

I can't walk well, and I have stents in my heart.  But compared with the horrific damage that can be done by so many autoimmune/immune mediated conditions, I have gotten off easily with a bit of Interstitial Cystis, Meniere's and moderate deafness, etc.

I scored very low on the Lupus test, of course.  One of the questions is about blood test results.  Even if I had the damage to my system of the type caused by Lupus, for me it wouldn't be called Lupus, since my basic Immune system attacks me, without antibodies and without blood factors that show up on tests.

Hugs,  Elaine (I feel LUCKY).


Female-Elaine,79-CVID-pSJS-WMD (Eylea) Inter.
Cys-PN-CAD-Osteoarth-SFN-Oral Lichen Planus-SIBO-Act.Purpura-Tinitus-Meniere's-Hearing Loss-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamx-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Om.3-Methotrexate-Esome

susanep

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Re: lupus screening quiz
« Reply #31 on: January 19, 2015, 01:24:46 PM »
I scored 88%, and have lupus. I never know how to answer the one on hair loss. I don't know how much hair loss is too much. Can any of you give me an idea on that?

susanep
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

litliwlowa

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Re: lupus screening quiz
« Reply #32 on: January 19, 2015, 03:46:19 PM »
31% here.

One question listing all the tests? Most of those have not been run on me
SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteopenia, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis, Cancer, etc etc etc

Chris

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Re: lupus screening quiz
« Reply #33 on: January 19, 2015, 04:22:12 PM »
94%
47 year old mom of two. Sjogrens, Hashimotos,small fiber neuropathy, neurogenic atrophy(myocitis)
Armour, methotrexate, plaquenil, folic acid,
Vit D3',Claritin, ,Ivig, Rituxin

Scottietottie

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Re: lupus screening quiz
« Reply #34 on: January 19, 2015, 04:37:35 PM »
63%

I have a dx of lupus/sjogren's overlap. Bloodwork suggestive of lupus - symptoms suggestive of sjogren's.
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


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SjoGirl

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Re: lupus screening quiz
« Reply #35 on: January 19, 2015, 05:06:38 PM »
75%
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

irish

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Re: lupus screening quiz
« Reply #36 on: January 19, 2015, 06:59:06 PM »
As mentioned many times, the Sjogrens and Lupus are kissing cousins so even doctors have trouble differentiating between the 2 diseases. It should be noted that the lupus is known to also cause depression and psychosis on a more severe level. This can be one symptom that can send up a warning signal.

I also think that most people with Sjogrens will have a good many of these symptoms. There are numerous tests out there that we can take to indicate one disease or another, but they can be so confusing for all of us. Still have to wait till the blood work and the doctors can pull everything together.Irish

Head2Toe

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Re: lupus screening quiz
« Reply #37 on: January 19, 2015, 10:49:26 PM »
10/16 - 63% - although I OFTEN wonder if I have vasculitis.  Every doctor I've seen over the past few years has looked at my  hands (red blotchy palms) and has commented that they are 'unusual' - but no one has suggested any tests.  Some have asked if they turn blue as well - no they don't.  I do get white blotches as well but they are variable (change all the time); the red spots never turn white because they are more like stains on the skin surface rather than under the skin.  It's very frustrating because it's pretty clear to me that *something* is going on that is NOT normal :(

Oh - a number of colleages at work have commented on the colour of my hands.  I'm not embarrassed, but relieved to know that other people seem to be able to see what I see, even if for some reason it doesn't click with doctors  ???
Female-57; Endometriosis (dx-1977); Cervical Osteoarthritis (dx 2014); Laryngeal Reflux (dx 2015); Seronegative & Negative Lip Biopsy

mshistory

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Re: lupus screening quiz
« Reply #38 on: January 20, 2015, 02:03:35 PM »
13/16 - 81%

I have been diagnosed with both SLE and SjS. I'm not sure there's much difference except labs (particularly anti dsDNA) between severe SjS and lupus and sometimes I think I have really severe SjS because my labs are so textbook for SjS.
SLE and SjS with PN. ANA >1:1280 speckled,
SS-A >8.0, RF positive. Botox for migraines, Clonazepam, Zoloft, Imitrex for migraines, CellCept 1000 mg, Plaquenil 200 mg, Restasis, Zofran for nausea, Gabapentin, Evoxac and Norco for pain.