Lupus Family

[Purpletop]

From what I'm reading on this forum and other literature regarding lupus, it seems that it is predominantly followed, or accompanied by other autoimmune diseases.

Given the difficulty in diagnosis that many of us experienced and still experience, I wonder why the medical profession doesn't categorise all connective tissue/autoimmune diseases as one all encompassing disease that expresses itself in each individual through different symptoms, particularly where the basic treatment seems to be the same. That way everyone can be diagnosed quicker, the sufferer can absorb the news about the illness better (I would rather have one illness with multiple symptoms, rather than many illnesses with overlapping symptoms) and treatment can be started earlier.

But I'm not a doctor, so I am probably looking at all this too simplistically. Still, I dread the time when a new lupus related illness will come up, I'm sure I will feel like I'm falling to pieces.

[larissa]

That makes perfect sense to me ! ........ but, i think there may be a reason they dont, not that i would know what that reason is ????? I wish it was that simple , sounds so much better than being dragged through the process lol x

[katerowley]

well some doctors do, i also think its based on how many symptoms you have like butterfly rash its lupus, but when you flat feet, fibro, SCLERODERMA etc. its connective tissue disease. this is why there are real problems with people going through ATOS because they think everyone should have the same symptoms.

A simple case is both me and my sister are connective tissue, but the only thing we have the same are raynauds, skeletal muscle, lymphoma and SCLERODERMA. I was told 23 years ago that lupus is the great mimic disease and there isn't a test that can say you have lupus, only a blood test which can rule everything else out, then its a maybe.

Has for medication your normally started on inflammatories and steroids to try and control it, but these are not suitable for everyone, i had major problems with steroids, major weight muscle gain that i had to come off them after three months, and i had to stop anti inflammatories after 8 years when they gave me a stomach ulcer, and i had a major fight trying to convince a GP they were the fault, and he didn't like it that he was wrong.

Its only living with it for 23 years, I've understood a lot more about the disease, I've been having a rough time since i got cancer in 2011, i caught shingles in the hospital and I've been feeling yucky since then and my rheum thinks the tiredness is lupus related.

[EOLHPC]

Yes to all you've said above, you guys!

Yesterday I saw my long-time hero pain consultant for steroid injection of mortons neuroma+bursa in my worst flipper (ha). It's first time I've seen him since my SLE diagnosis and treatment starting a few years ago (but, natch, I've been coping with all my stuff since I can remember, with 'help' of NHS (plus what private I could afford while NHS sidestepped me)). So, now we know I have had SLE underlying everything nice infancy when actually I was first diagnosed (but my mother kept that secret till now): ok....and my pain consultant hero says: yes we see so MANY patients ith possible SLE but negative ANA or whatever...it's so hard to diagnose.... And this guy has treated me brilliantly for years so I know he's good. I just said: my impression is that bloods aren't everything in diagnosis, and, even before bloods reults are in, an autoimmune experienced consultant can spot and begin to treat SLE or whatever after only taking a full medical history and conducting a full physical exam....to which my pain guy nodded his head in silence!

[Heatheric]

I think the problem is that medics look at us as a series of symptoms and organ systems - not as a whole person. Then when we have a range of symptoms (arthritic, cns, urological) we end up with different specialists. We need to encourage the medical profession to have a more social model of care which puts the individual at the centre and addresses our symptoms and needs as a whole. A bit lke the permaculture approach advocated by another blog on this site.

[Cal66 in reply to Heatheric]

I totally agree it took at least 6years before I was diagnosed, but had not gone into our local newspaper & someone who also had lupus, she suggested that because of the range of my symptoms it was possible that I may also have lupus. I then mentioned it to my Rhumatologist, who started me on steroids straight away before the diagnoses was confirmed, that was now over 22 years ago.