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Discussion Starter #1
Hi,

I need your opinions on weather i could have lupus, or am i just being silly.
When i was 11 yrs old i had shingles, i was very ill and have never really been well since.
The symptoms i suffer are:
An impaired immune system
Joint pain and muscle pain (ranges from bearable to agony)
Severe headaches that get so bad that i have to sit\lay in a dark room
Sun sensitivity, it's almost like getting sun stroke from just half an hour of exposure along with a rash that gets sore
A heart murmur
I have been anaemic for 7 years now
Extreme fatigue
Severe stomach pain
Grand mal seizures (photosensitive)
Kidney pain
Rashes\hives with no apparent reason.

My grandmother on my fathers side has systemic lupus.
I have tried talking to my GP about this but because i was diagnosed with M.E 4 yrs ago he just doesn't listen. I have asked him to test me every week for the last 6 months and he refuses.
Should i keep going until he agrees to test me or should i just leave it?
Sorry this message is so long.
Many Thanks
Sarita x x x
 

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Hello Sarita,

I am certainly not an expert and in fact only joined this site myself a couple of days ago but from all the info I have found on here and from what you have said you are suffering, I would say that you HAVE to be tested for this!!!!

You are NOT being silly and should definately not just leave it !

In my opinion though, you should find another GP immediately - It doesn't look as if you will get help quickly from the GP you have at present.

Even if you do not have this problem - you HAVE to be tested to rule it out!

Very best wishes,

Dea x
 

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Hello Sarita and welcome :)

I'm sorry to hear what brings you here. Based on that list of symptoms I would certainly want more thorough investigation. As far as I can see, with my limited knowledge of ME, it just doesn't cover everything that is going on with you and maybe you have had something else all along.

People do sometimes get a change of diagnosis as auto-immune diseases in general are very complex and don't always present clearly. It sounds like a referral to a rheumatologist that specialises in auto-immune diseases would definitely be very worthwhile.

I would certainly NOT give up. We are talking about your quality of life here. As the previous poster said, if your GP won't refer you to see a rheumatologist, then you need to think about changing GP. Sometimes after many years with the same GP, they tend to blame everything that is wonrg with you on one thing. That is unfortunate as we can have different things wrong with us too and we can also have been misdiagnosed in the first place.

Keep us posted but please don't give up,
Katharine
 

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Discussion Starter #4
Hi everyone,

I have an appointment with my GP in the morning, and short of biting his head off I'm not sure what to do anymore.
Does anyone have any advice on what i should say to him so that he will take me seriously.
Anything will help, many thanks x
 

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Hi there,
Welcome to the site, I am really sorry you have had such a rough time.

It is very difficult to recommend how to deal with your gp, obviously not knowig him and what he might respond to. If anyhting he obviously hasn't responded to your concerns so far!!!

I think What I would do is take the American College of Rheumatolgy classification criteria with you, of which you already have several going on!
You are surposed to only need 4 of these to diagnose but one or more does usually need to be the positive ANA and dsdna or dna, alot of docs will not actually diagnose withput a positive anti dna or dsdna.

The Eleven Criteria Used for the Diagnosis of Lupus



Criterion
Definition

Malar Rash
Rash over the cheeks

Discoid Rash
Red raised patches

Photosensitivity
Reaction to sunlight, resulting in the development of or increase in skin rash

Oral Ulcers
Ulcers in the nose or mouth, usually painless

Arthritis
Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)

Serositis
Pleuritis or pericarditis (inflammation of the lining of the lung or heart)

Renal Disorder
Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)

Neurologic
Disorder
Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects

Hematologic
Disorder
Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.

Antinuclear
Antibody
Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.

Immunologic
Disorder
Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).




Adapted from: Tan, E.M., et. al. The 1982 Revised Criteria for the Classification of SLE. Arth Rheum 25: 1271-1277.

Sorry I tried to do this as attachment but couldn't, you can just copy and paste it on to a page to print.



Then I would ask your doctor to look at the list so he can actually see that you do meet 4 or more criterion without the blood tests and then say that you have actually have sort advice from other lupus suffers some of them who went o for many years not being investigated for the disease before finally being diagnosed. You do think from what you have read that there is definately something going on, if not lupus then something else. And it aleast warrants running the ANA screening as a starting point, or atleast make a referral to a rheumatologist who can assess you for himself. Be very assertive, speak slow and clear and that way hopefully he won't be able to interupt.
If he tries to fob you off after this, then I would tell him, that you were hoping that after this discussion that he would take you seriously and therfore you will have no choice but to seek a second opinion.

This very difficult and I really do feel for you.

I really hope this helps, am not sure here if I've given the right advice or not!!

Take Care and Good Luck.

Cassie :)
 

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Have you seen a rheumatologist in the past, who tested you properly including ANA tests (among others) and gave you the M.E. diagnosis? That is what *should* happen because that diagnosis is actually a diagnosis of exclusion. So all other possibilities should have been ruled out.

That said, your symptoms don't really fit well with that diagnosis, and it shouldn't be used as a catch all with doctors assuming from that point forward that you don't need any additional testing especially if symptoms change and/or persist over time. When symptoms persist, especially when they are consistent with lupus/autoimmune disease AND there is a family history of it, then I think you definitely deserve rather routine follow up testing and monitoring in the form of some simple blood tests and possibly a visit to a rheumy every year.

If possible, change your GP to one that is willing to at least run a few simple tests and refer you to a rheumy if you haven't been to one yet or in the last few years.

PS: I wouldn't refer to the pain in your back as kidney pain - it's hard to know where it's coming from for sure and doctors will view this as a form of self diagnosis which is off-putting to them. Best to describe it's location, how long it lasts, how severe it is, how often you get it, etc.
 

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Hi Sarita

Just wanted to say hi and welcome to the board. You have been given some excellent advice. Let us know how you get on at your doctors today.

Deb
 
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