Maybe LUPUS: I just saw a... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Maybe LUPUS

haley profile image
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I just saw a rheumatologist who does not think my symptoms are APS symotoms. ( I had one positive test for APS antibodies that was very high in 2011, and was diagnosed with APS then.

This rheumatologist wants to test further for lupus. No one has ever previously remarked on my low WBC. What does it say about vaunted U.S. health system that no one has ever noted (over 4 and 1/2 years)

low WBC, rash, leg fatigue, IBS-C, stomach ulcers, canker sores, weight loss, ankle edema, hair loss, high protein C activity, and at least, considered lupus.

Waiting now for results of blood work. Not sure what to hope for...a diagnosis would be good.

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haley profile image
haley
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jessielou profile image
jessielou

Hi Haley

I think it depends on rheumies interpretation and sometimes the mood they are in on the day. My diagnosis is Aps with lupus symptoms overlap and fibro, not lupus cos only positive lupus antibodies and ana positive both 3 times now. A professor in chemical pathology says, lupus!! Other a rheumy says not!!! Very confusing, in the meantime we have to live with it!!

If you read through the posts on here, check out suzipawz symptoms Olympics, using search box above! we have an awful lot of symptoms in common and in common with lupus etc!!

I also had missed, low WBC, vit D deficiency and extreme high cholesterol, how did they miss all that????

I hope at least they will start treating you right and hopefully come to a diagnosis!!

Not much difference around the world heh???

Take care gentle hugs love Sheena xxxx :-) :-) :-)

MaryF profile image
MaryFAdministrator

Hello and I have both, APS does not go away, however it can hide in tests! Mary F x

Renae profile image
Renae

Low wbc, as in white blood count? That isn't a lupus sle indicator. A positive ana is merely an indicator of an autoimmune disease, so it can be positive due to the aps.

Fibro is not an autoimune disease like aps or lupus. Fibro is a muscle issue and there is no blood, xray, or mri test available for fibro..Here in the US alot of doctor's still don't believe in fibro because there is no test for it.

haley profile image
haley

The lupus site (thelupussite.com)does say that antibodies against white blood cells are common in 95% of lupus patients. I do have a positive ANA as well. I know that can also show up under a number of conditions. I have not discussed fibromyalgia with anyone, but understand that that is not a diagnosis, but rather a description of symptoms. It will be interesting to see what shows up in the latest blood work.

kathyD64 profile image
kathyD64

fibromyalgia is very controversial Renae there has been some suggestions it is auto immune or has auto immune tendencies as often the symptoms easily overlap with endocrine issues such as thyroid and adrenal glands - see DR Lowes explanation.

APS specialist imply it is a condition that really should only be used once all other explanations have been ruled out especially with someone who has an existing auto immune condition.

So many symptoms overlap i find all it very confusing because CFS, ME, adrenal fatigue Fibro have so much in common - the reading i have done on the subject (i acquired this diagnosis but without exclusion of other auto immune conditions whilst in a flare of my longstanding APS) so have had an invested interest in the diagnosis and i conclude it does have underlying auto immune issues but belittling its existence im sure people who suffer terrible symptoms from this condition would say it does exist and is in fact recognised because people often do have to leave their jobs because of its debillatating effects it has on them.

I wish experts would work more closely together to correlate their findings and agree because as with APS many doctors do belittle fibro as a diagnosis believing its just a name for shit life syndrome!

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