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hi everyone my name is sue I live in manchester in england and I think I have lupus I suffer from fatique muscle pain I have a rash on my face I find daily tasks really hard the pain is mainly in my upper body arms shoulders etc I have a funny rash on my scalp I have been to my doctors 100s of time and the hospital but they are treating the symstoms individually I am feeling very depressed and lonely its very frustrating thanks sue:sad:
 

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Hi Sue and welcome to the board. I am sorry you are having such a difficult time. You no longer have to feel alone. You have found a site where you will receive lots of support and advice. It has taken many here a good while to find the right doctor to connect all the dots and make the proper diagnoses. I can understand your depression...it is something I battle daily even though I take anti-depressants. Please keep posting. Sending you good thoughts and Best Wishes, Rosie
 

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Hello Sue

Welcome to the site. It is packed with a wealth of information and lovely people. Sorry you are having such a frustating time, it can be very depressing to feel so ill and not have any answers. I wondered which types of doctors you have seen and what tests they have run?

Take care

Deb
 

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Hello Sue and welcome :)

I'm sorry to hear you have been feeling so unwell; it is indeed very frustrating when you're going around in circles and no-one is joining up the dots.

It is very difficult to say whether you may or may not have lupus. It is an extraordinarily complex disease - often called the disease of a 1000 faces as it mimics so many others. Its diagnosis (and that of other auto-immune diseases) is complex and can often take time.

I think the first step would be to approach your GP and explain that you think that there is more going on here and possibly ask whether he/she thinks it might not be something auto-immune (don't say "lupus" specifically, doctors hate patients doing that).

If it hasn't already been done ask him to run an ANA test. Also, if you can get him to refer you to a rheumatologist, that would be a good idea. However, do make sure you go and see one that is specialised in auto-immune diseases. Not all are. If you would like a recommendation, you can post here in the "find a doctor" section.

If you do go and see a rheumy, don't expect instant results. Even for an expert diagnosis is not be easy. If you're ANA is negative it is even harder. Although ANA negative cases of lupus exist they are rare (only between 2 and 5% of the lupus population).

You can take a look at the ACR classification criteria via this link. It might help you see whether what you are experiencing fits.

http://www.thelupussite.com/forum/showthread.php?t=33123

Even if it turns out not to be lupus, a good rheumy would be a good place to start to see who can help you if he/she can't.

Hope that helps,
Katharine
 

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Another option might be to ask a dermatologist to do a skin biopsy (on either affected or unaffected skin) with a view to looking for an auto-immune disease. That might be easier for you if you already see a dermy...

This link explains the lupus band test - I didn't have it on exposed skin at all, only on "unaffected, unexposed" skin.

http://www.uklupus.co.uk/sbiop.html
 

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Sue,
Hi and welcome to the site. It is not uncommon for doctors to not put things together. You may have to be the one to ask do you think I have lupus? Your gp is a good place to start. I don't often tell people to do that but it seems that you are not really getting anywhere with some help. Even if you have lupus typically it is the treatment of the symptoms that they do as lupus is not curable as we all know all so well. I hope that you are doing well and feeling well and Happy Easter.
 

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Hi Sue,
Welcome to the forum.:)

It is nice to meet you. A lot of us here understand the frustration with getting a diagnose.

I can only echo what Katharine has said. Suggest maybe an autoimmune disease. Some doctors will get their feathers ruffled coming in and saying I have lupus. That is self diagnosing.

Going to a dermatologist is a good idea too.

I hope you find your answers.
Take care,
Lyn
 
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