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Old 12-18-2008, 08:25 AM   #1
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Undiagnosed Lupus?

Hi, everybody.

I'm 20 and have been having the odd aches and pains, some more intense than others. They are intermittent, coming and going. I've had pains down mylegs, in my foot and toes, in my elbow and in my hands and arms. I also have back pain which have only shown early disc degeneration with a Schmorls node.

I have a family history of auto-immune diseases.

The thing I have noticed is that I have had a red, scaly, itchy facial rash on each side (both sides) of my nose area that is slightly round in shape like a blotch. I've had this rash on two occasions now, this being my second occasion. It is really itchy.

I've been to the doctor (he's not a Rheumatologist) but he hasn't tested me for Lupus...

Is this rash a possible sign, as well as my aches and pains, of Lupus?

Last edited by moderator2; 12-18-2008 at 09:53 AM. Reason: please do not post pictures for any reason - as per the posting policy

 
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Old 12-18-2008, 09:36 AM   #2
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Re: Undiagnosed Lupus?

I had a severe virus when I was 17 that no one took much notice of as such. The doctor wouldn't come out even though I was severely ill. My doctors don't come out for anything unless people are dying!

My mom left dad in charge at the time of ringing the doctors up and apparently he never rang them up - he forgot! I told her that she shouldn't have left him in charge of these sort of things if he's that forgetful but she told me she didn't know at the time and made excuses for letting him be in charge of ringing the doctors up and told me not to give her 'a hard time'! I feel like she doesn't want to admit that she was in the wrong with putting people in charge that aren't very good at remembering.

If I could go back in time (which I know I can't) I would've rang them up myself as at least when I do things it gets done. Now I just don't know if that virus even caused this or not as I've been sickly ever since I've had that virus and no one seems to care or notice it. I feel so alone.

My mom is fed up with me and taking me to the doctors now as I'm having flare-ups of many health problems. I just can't take it anymore. I feel bullied for being ill. I feel like it's my fault for being ill.

I don't know what to do as I feel like I'm on my own. I'd do better probably moving out if no one cares? I'm just so fed up of being treated like it's my fault all the time...

Thanks for any help or advice you can give as, at least here there are people who actually care and know what being ill is like.

 
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Old 12-19-2008, 03:20 AM   #3
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Re: Undiagnosed Lupus?

Niad, the literature says that most lupus rashes tend NOT to itch. And, unfortunately, even a dermatologist often can't tell from appearance alone what a rash is. They sometimes have to do tests, like skin biopsy, to tell one rash from another. Things like psoriasis and rosacea can also appear somewhat in the same ballpark, I think.

Likewise, aches & pains are seen in many conditions, including in common viruses like mono.

Have you read the "sticky posts" (permanent info posts) at the top of the thread list? Another thought: Dr. Graham Hughes is a reputable rheumie/author, whose books you could probably find in your local library.

I'm sorry you're having such problems & hope you post more when you have time. Bye for now, with best wishes, Vee

 
Old 12-19-2008, 03:39 AM   #4
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Re: Undiagnosed Lupus?

Hi, VeeJ and thank you for your post.

My rash on my face has not as much redness now but has left shiny, white scarring where it once was. In the below information, Lupus rashes can sometimes itch, though not always. The only real way I'll find out is with tests I'd imagine. A normal rash doesn't really appear twice in the same areas either so that gives me suspicion still. I'm not allergic to anything as I never put any skin creams or anything in these areas either so I know that will not be the cause. I can't think of anything I've done to cause it.

( removed )

There are two different types of rash that go with the different types of Lupus. My symptoms still sound similar to the Discoid rash.

Are aches and pains continous for three years + with mono? Just trying to learn about what it could be.

I'll take a look at the sticky posts. I'll have to go to my local library and see if they have this book as it sounds interesting.

I don't think that basically it's just a rash.

Thanks for your help and information and I'll keep you updated on what I find out.

Kind regards

Niad

Last edited by moderator2; 12-19-2008 at 07:16 AM. Reason: posted disallowed website(s) - copied from website - please read the posting rules

 
Old 12-19-2008, 07:41 AM   #5
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Re: Undiagnosed Lupus?

Niad, Based on the residual scarring & whitening you describe, I agree that discoid lesions may be one possibility. (I'm ONLY a patient, though!)

From what I've read & was told by my doctors, people with ONLY discoid lesions, with maybe some fatigue & arthralgia, can be viewed as in the DLE (discoid lupus erythematosus) "subset". As many as 50% in this group are sero-negative, both for ANA & for more specific autoantibodies. While viewed as the mildest "subset" on the spectrum, the cosmetic implications can be very grueling. However, a small percent of people in this group do go on to develop full-blown classic SLE.

(FYI, there's also an intermediate "subset" called SCLE, in which people commonly fulfill 4+ of the criteria, but usually NOT the most serious ones like kidney & CNS. That's the group I'm in. I had years of GI & urinary problems, B-12 anemia, pain, fatigue, photosensitive nonscarring rashes, hair & weight loss, low-grade fever, migraine-like headaches, neuro-like tingling, etc. I'm doing well on just Plaquenil & sun-avoidance.)

I was told that the type of lupus rash you have DOESN'T define the degree of lupus you have. And that rashes can "cross subsets". These statements convey that it's the TOTALITY of your symptoms & tests, pursuant to the 11 criteria on that sticky post, that define the degree of lupus you have---not the specific rash. Indeed, some (by no means all) patients have *multiple* kinds of lupus rashes. I had many SCLE annular outbreaks, one widespread outbreak of what *may* have been bullous lupus (huge watery blisters), and one single "discoid" scarring lesion, right smack on my face, naturally.

But I've known people with OTHER skin conditions that depigment. Vitiligo is one (also autoimmune, I think)---and I'd bet there are many others.

FYI, two other fine rheumie/authors are Dr. Daniel Wallace and Dr. Robert Lahita. I don't know if they are readily found in the U.K.

Anyway, I hope you make only progress from this point on. Keep in touch, to let us know how you're doing, OK? And post anytime you just need to talk. Warm wishes, Vee

 
Old 12-22-2008, 09:58 AM   #6
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Re: Undiagnosed Lupus?

Hi, VeeJ.

Thanks for your informative and helpful post. I found it to be very interesting.

I saw a nurse in the practice and she recommended I see a doctor.

I've got an appointment with my general practitioner to see what his opinion would be to go from. He may need to do some tests as, like you mentioned, it can't be diagnosed from just the rash alone and that makes perfect sense what you wrote, I totally agree.

I have heard other auto-immune diseases can produce rashes.

I'll have to keep an eye out for the two other rheumie authors. I think my library would be a good place to look.

It's good to hear you're doing well on your current treatment and I hope your symptoms continue to improve as chronic illnesses can be very annoying and tiring.

I thank you for your help and support, it's much appreciated.

I'll keep you informed on the outcome and how I get on.

Kind regards

Niad

 
Old 12-22-2008, 02:41 PM   #7
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Re: Undiagnosed Lupus?

Niad, I should have said a few more things about SCLE rashes.
1. They generally don't scar/depigment---which probably mean they CAN, at least occasionally...?
2. ANA (the general threshhold test) is positive in roughly only 2/3 of those who get these 2 SCLE types; and ditto with *anti-Ro* autoantibody. Anti-Ro is also seen in Sjogren's syndrome.

Looking back, I wonder whether my local doctors knew that anti-ds-DNA and anti-Sm are NOT the only two autoantibodies possible in lupus. They are the two only very *specific* ones, which is why they are the only two listed as criteria. BUT there are more than a dozen more antibodies & complements possible. So if your new doctor does new bloodwork, I hope he/she looks far & wide, is what I'm saying.

So, good luck finding helpful books. Stay in touch, OK? All my best to you, Vee

 
Old 12-25-2008, 06:40 AM   #8
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Re: Undiagnosed Lupus?

Hi, VeeJ.

Thank you for your helpful post. I found it very informative.

I'm not sure if general practitioners really know all the tests for Lupus. I know that a rheumatologist would be the best bet. I have been told to go and see a rheumatologist.

It sounds like they will need to do quite a lot of tests to rule it out and find out what it is.

I've done a list of the tests to have which I looked up from the internet to help him arrange them for me and make sure he does the right ones as I've found that general practitioners sometimes get a bit confused and don't know what to do.

I've got an appointment for the middle of January to see the different doctor.

I'll keep you posted on the outcome.

PS: Happy Christmas!

Kind regards

Niad

 
Old 01-08-2009, 01:53 PM   #9
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Re: Undiagnosed Lupus?

Update: I went to my GP today and he reckons this red rash on my face that comes and goes could be a form of lupus and has told me I need some investigations to find out if it is or to at least rule it out. He has told me to book a blood test with one of the Sisters in the next week or so. He is also referring me to a Rheumatologist as he thinks it would be a good idea, knowing from my previous history of a spine degeneration problem that still isn't known what is going on with it.

I'll keep you updated.

Regards

Niad

 
Old 01-09-2009, 04:20 AM   #10
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Re: Undiagnosed Lupus?

Niad, I'm glad your GP has set you up for bloodwork & a rheumie consult. I hope you find more clarity quickly. All my best, Vee

 
Old 01-09-2009, 01:53 PM   #11
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Re: Undiagnosed Lupus?

Hi, VeeJ and thank you for your support.

I'm pleased too as it is so difficult to find a GP that actually has the time to try and suggest at least ruling out things with investigations and this GP seemed very interested in trying to help me.

Though I saw different GPs within the same surgery. All of the others never really wanted to or had the time, not sure, to find out what was going on, maybe pure laziness but this GP I went to was much better and I kind of feel like I should've seen him before with all my problems as by now I'd have at least probably known what may be causing all my symptoms or not.

I'm scheduled for the blood test on Tuesday morning. Out of curiousity I've always wondered why the doctor says to make the appointment for the blood tests in the morning though. Does it have a particular thing to do with the actual test or is it because the bloods are sent off in the morning?

Just wondered if you might have known something about this as I've always been curious as to know the reason.

Kind regards

Niad

 
Old 01-09-2009, 08:54 PM   #12
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Re: Undiagnosed Lupus?

Quote:
Originally Posted by Niad View Post
I'm scheduled for the blood test on Tuesday morning. Out of curiousity I've always wondered why the doctor says to make the appointment for the blood tests in the morning though. Does it have a particular thing to do with the actual test or is it because the bloods are sent off in the morning?
Niad - I don't know the answer - but are you fasting for the blood tests? Around here, only those that are fasting for their blood tests can be seen before 10am. Not sure if thats the same for you - but just an observation.

 
Old 01-10-2009, 12:15 PM   #13
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Re: Undiagnosed Lupus?

Hi, newbrunswick45 and thank you for your advice.

I don't know if I'm to fast (not eat) or not for this blood test as my GP/doctor didn't mention it. He just said to make the blood test for in the morning. My blood test is for 10 am in the morning.

 
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