PDA

View Full Version : Lupus...or not?



JD
06-30-2007, 04:40 PM
Hi everyone,

My name's John, I'm 23 and from England, and I would really appreciate your advice.

I've been feeling tired (drained, like I haven't woken up properly) for as many years as I care to remember. When I was younger I had major test pains, like a stabbing in my chest, almost like my lungs have collapsed, it's mainly been on my right side, but when it's bad it's my entire chest and I can't walk and talk at the same time. I haven't had a major 'attack' like that for a while now, but I do get strong warning pains in my chest reasonably often.
I recently had a diabetes test, to try and work out if that's why I feel so drained, which came back negative. When my chest pains were active I had blood tests and x-rays done, and they all came back with nothing obvious.
To cut a long story short, recently my mother has been diagnosed with Lupus (she's undergoing the final tests now, and is having the B-12 shots at the moment) and whilst I realise that Lupus isn't genetic, apparently there's a higher chance of having the disease if relatives have been diagnosed with Lupus.
Since my attention has been drawn to Lupus I've been going through the symptoms, and I especially noticed the 'butterfly' rash. I've had, for years, a mark running across my cheeks under my eyes and over the bridge of my nose. Sometimes the skin is raised, sometimes it's dry, sometimes it's dark red, sometimes it's very light pink and hardly noticable. To top things off just over the past 2-3 years the eyesight in one of my eyes has all of a sudden started deteriorating, this occurs along with stabbing pains in and behind my eye.
Anyway, the reason I'm making this post is because I don't want to appear a hyperchondriac, and go causing a scene speaking to doctors and generally drawing attention to it, especially when my mother has been diagnosed with Lupus and everyone's on edge, but I would really appreciate the information and opinions of people who have actually experienced, and understand and know the background of this disease.

Thanking you in advance for all your advice,

John

juanerd
06-30-2007, 08:36 PM
Hi John,

Sorry to hear of your ailments. Have you ruled out all manner of things cardiovascular? Had an EKG?

In any case wish your mum well for us from here outside of San Francisco. If you're in pain and your eyesight is deteriorating then most likely you have some ailment. We all know pain indicates some ailment. I can't say that I have had the same ailments after having been diagnosed with lupus but your rash could very well indicate some lupus type condition. Raise the lupus issue with your docs and keep us all posted.

Hang tough, we'll light a candle for you.
J

JD
07-01-2007, 03:16 AM
Hi Juanerd,

Thanks your your wishes and information, I have had EKGs and X-Rays when the pain was solid in my chest but they didn't find anything.
I've read that in rare cases lupus can affect eyesight and cause pain and loss of vision? All I know is that when I went to the opticians they didn't know, and suggested possible Visual Migraines. Maybe I'm just grabbing at straws...

My mum has started going through the hair-loss phase, which must be very upsetting. I've read that depending on the Lupus it may or may not grow back. What's your view on this?

By the way, my wife is from Michigan, so I may well be in your neck of the woods in a year or two! (By that I mean the U.S., I realise that San Fran is nowhere near MI!)

Cheers,

JD

IloveHistory
07-01-2007, 10:27 AM
Hi JD!

Welcome to the Forum! :D I'm glad that you found us! :D

Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

I would speak to the doctors about it, especially considering the fact that your mother has just been diagnosed with Lupus. Do you have any issues with photosensitivity (sun-sensitivity) or joint problems?

Have you had your eyes checked for Glaucoma? Does anyone in your family suffer from Glaucoma at all? Here's some information for you:

http://en.wikipedia.org/wiki/Glaucoma

http://www.glaucomafoundation.org/about_glaucoma.htm

I hope that this helps!

If you need to ask questions about your mother, check out 'Friends and Family of S.L.E.', where we'll all be happy to help!

Keep well! :)

JD
07-01-2007, 02:10 PM
Hi History!

I'm not sure if any of my family have a history of glaucoma, thanks for the links, I've had a browse, and will look into it a bit more.

I have had joint issues for years, I'm not sure if it's relevant or not though...they sometimes get painful and slow, and they click a lot, which can be painful. Everything from my toes to my spine cracks and clicks! They do ache too, which is a sort of throbbing sensation. It's hard to explain!

I don't think I've ever had photosensitivity, I know my mum does, she has for years and comes up in big painful blisters if she's out in the sun for any length of time. I don't have anything like that, of that I'm sure!

Sorry to be a pest!

IloveHistory
07-05-2007, 09:40 AM
Hi JD!

It's only a pleasure! :)

No worries! You're certainly NOT a pest! :lol:

Keep well! :)

JD
08-30-2007, 02:24 PM
Hi everyone,

I just thought I'd give you an update, and also ask your opinions...

I went for a blood test in the middle of July, and a few weeks ago got the results, they came back as 'borderline'. My doctor then sent me for another set of tests, which I recieved yesterday, and he's requesting that I go for yet more blood tests, this time in 12 week's time. I've requested an appointment with him, which hopefully will be tomorrow, but I wanted to ask some opinions.

Is it normal to have these results come back as 'borderline'? What exactly does 'borderline' mean with this test?

The blood test I had was the Lupus anti-coagulant tests (lupus antibody tests?).

Any info would be greatly appreciated.

Cheers,

JD

hbodin@yahoo.com
10-09-2007, 06:25 PM
i will respond better later, bad day for me, death in family. but lupus can be genetic, i got mine that was it was found in my dna they knew before me that it was definatly hereditary. just wanted to get that piece of info to u, will check back, thanks new member. heather bodin

Saysusie
10-12-2007, 11:32 AM
The ANA (anti-nuclear antibody test) is merely a screening test for lUPUS. It neither confirms or denies Lupus. Most people with lupus will have a positive result for the ANA test. If the ANA test comes back negative it is considered a normal result, and it is very good evidence against lupus as an explanation for the symptoms a person may be having. If the ANA test result comes back above the normal range the test is said to be positive. A positive ANA test by itself is not proof of lupus. There are many illnesses and conditions associated with a positive ANA, including rheumatoid arthritis, Sjogren's syndrome, scleroderma, and lupus, as well as infectious diseases such as mononucleosis, subacute bacterial endocarditis, and autoimmune thyroid and liver disease. Diagnosis is therefore based on meeting certain criteria for the disease which are based on the symptoms you have had, your physical examination, and your blood tests. In systemic lupus, eleven criteria were developed for research purposes but are frequently used to diagnose lupus (See criteria in "Newly Diagnosed".
Lupus tends to develop slowly and symptoms change over time. If your ANA is borderline. this could mean that your symptoms are developing and your doctors may want to wait until symptoms develop before they make a diagnosis. All tests have a normal range of values. If a test value is at the upper limit of the normal range or slightly over, it's often referred to as "borderline." The importance of a borderline ANA test depends on the other criterion that are present. A borderline positive ANA will probably be ignored by your doctor if there are no other criteria present or if there are only one or two other criterion suggesting lupus. However, if you have three or more criteria, the borderline ANA will probably help to give you a Lupus diagnosis.
I hope that I've ansered your question. Please let me know if you need anything further

:lol:
Peace and Blessings
Saysusie

JD
01-30-2008, 11:09 AM
Hi everyone,

I hope you're all well.

Several things have happened since my last post... my mum has officially been diagnosed with Discoid Lupus, I've had 4 blood tests (once every 10-12 weeks) since last June, all of which have come back positive for lupus. The doctor hasn't told me any more than that, other than that lupus is indicated by the results they've had.

I've got more tests booked for next week, so i'm hoping to find out more in a few weeks time.

However, there's a question I would like to know the answer to:

Does the malar rash fade over time, and return when flares occur?

When I originally saw my doctor he told me that what I thought was the malar rash on my face (it starts at the edge of my cheeks, and is on the top part of my cheeks, it runs under my eyes to my nose, and up the side of my nose to my eyebrows, is usually raised, red and can be scaley) could not be the malar rash because the malar rash does not fade, and is permanent.

He seemed to believe that this was a major factor in my not having lupus, but seeing as every test has come back indicating lupus, I'm not sure I trust him any more!

I've looked online a little, and have seen no mention of the malar rash being permanent.

Thanks again,

JD

Update to clarify: the rash that I have doesn't completely fade, it tends to die down to be only slightly scaley, and gets less red and obvious, but it's still there, to a greater or lesser degree.

Suzique
01-30-2008, 12:25 PM
JD,
I am anxious to see how SaySusie answers this. I have never heard of the malar rash being "permanent." Mine comes and goes, and my rheumy always calls it a malar rash. I trust him implicitly, as he is a researcher and lectures all over the world about Lupus, RA, and treatments for both.
Maybe you do need to seek another opinion. I would be very concerned with all of your tests consistently being positive, the rash you describe, and the other symptoms. Sounds like you have 4 of the 11 criteria, but I am not a doctor.
I am new here, so I am just catching up on some of the posts from December and early January, and this one actually started last summer. Hope you are doing better now. Please let us know what happens.

Susan

Saysusie
01-31-2008, 11:10 AM
UGHHH...Some of these doctors!!! My Gosh, I'd like to know where they got their training!! I am not a doctor and there could be exceptions, but the malar rash is not permanent!

Anyway, the malar rash is the most common rash in Lupus. As you described it, it takes the appearance of a butterfly: it involves both cheeks and extends across the bridge of the nose (“mala” is latin for “cheeks”). It can also involve the forehead or chin. The rash is generally non-painful, comes on abruptly and DOES NOT cause permanent scarring but rather gradually resolves completely after time.

What your doctor may be thinking about is the discoid rash/lesion or the rash of subacute cutaneous lupus:
A discoid skin rash is characteristic of discoid lupus but it does also occur in systemic lupus erythematosus. A discoid rash usually has multiple small red areas that are covered by scaly skin. Unlike the malar rash, discoid lesions frequently cause scarring, if untreated, and are painful. Discoid lesions may occur anywhere on the head and face or the upper chest.
The rash of subacute cutaneous lupus can also occur in systemic lupus. This rash has raised, red dish areas that tend to be fairly chronic and can result in scarring. All types of lupus rashes can be aggravated by exposure to sunlight. Shallow ulcers like canker sores can occur in the mouth or nose and may be painless.

I still have very faint scars from my subacute cutaneous rash and from my discoid lesions. However, my butterfly (malar) rash is completely gone and does not reappear even when I am having a flare! Sometimes, it may appear in other lupus patients during a flare, but it always goes away. Perhaps you can educate your doctor a little on the difference between these rashes!!

Peace and Blessings
Saysusie

JD
01-31-2008, 12:39 PM
Hey all and thanks for your answers.

It's really appreciated to be able to talk to people who know what they're talking about! When I go back to the doctor I'm certainly going to call him out on his last statement. He has done nothing more than constantly call me a hypochondriac, when he could see clearly from my file that I've had a list of symptoms since I was young.

It does seem that it's the malar rash I've got then (as I suspected from the start!)

On another topic...

Have you found that you've been called hypochondriacs, or have had people question your mental well-being simply because they didn't know what's wrong with you?

The times that I've been called a hypochondriac or have had doctors try to perscribe me anti-depressants because they didn't know what was wrong with me. Every single time I told them that there's nothing wrong with my mind! Just my body!

When I've told friends about lupus I've even had a few of them ask 'Could it be something mental?'. It makes me very frustrated and angry!

Thanks again!

JD

jesseyleigh
01-31-2008, 12:43 PM
I actually just got extremely angry with someone for this. They told me that if i just believed that i was fine i would get better and that all illness is in your head (tell my immune system that LOL) I often get sworn at when climbing out of my vehicle with my disabled tag... and at disney world when using my guest assistance card i was once told that i was stealing things from dying children (the doctors still not knowing how serious things were) i think everyone has been told they were "just fine"

Saysusie
02-01-2008, 10:46 AM
ABSOLUTELY WE HAVE!! Unfortunately, this is one of the most frustrating things about having this disease. Now, linguistically, if you take the name of our disease apart, it will explain to you why we have so many symptoms. Also, the fact that this disease is chronic means that it is a lifetime disease!

Systemic= Affecting the entire body (skin, muscles, tendons, internal organs, joints etc.)

Lupus = an autoimmune disease that can affect various parts of the body, including the skin, joints, heart, lungs, blood, kidneys and brain. A chronic inflammatory disease that can affect various parts of the body, especially the skin, joints, blood, and kidneys, heart and lungs.

Chronic = A persistent and lasting disease or medical condition, one that has developed slowly and generally does not have a cure.

Erythematosis = A name applied to redness of the skin produced by congestion of the capillaries, which may result from a variety of causes, the aetiology or a specific type of lesion often being indicated by a variety of conditions.

So, the name of our disease means a lifelong illness that affects every part of our bodies and usually is first presented with redness on our skin (Malar Rash - Butterfly Rash).

So, if we go to our doctor with joint pain in January, and with chest pains is February, and Digestive Problems in March, and Rashes that itch and burn in April, with sore aching muscles in May, with open sores and lesions in our nose-mouth-anus-vagina in June, with hair loss in July, with debilitating fatigue in August, with heart problems in September, with lung problems in October, with liver damage in November and with all kinds of viral infections in December, and we start this process all over again in January...we are not being hypochondriacs......WE ARE SUFFERING FROM SYSTEMIC LUPUS ERYTHEMATOSUS!!!@

DO NOT let anyone (not even your doctor) belittle you or dismiss you by telling you that you are a hypochondriac. What is happening, instead, is that they are ignorant about our disease and they need to be educated. Stand up for yourself, educate yourself and fight for your right to be taken seriously and to be treated!!

As you can probably guess....this issue is one of my sore spots! :lol:


I wish you the best.....
Peace and Blessings
Saysusie

Oluwa
02-01-2008, 01:52 PM
Saysusie,

I loved your words, all of them....about life with Lupus and what it means. Bravo. As I read them, I felt you were right in my corner defending me, all of us...

Thank you for giving us a "script" to stand up and say, hey..hey ..excuse me...wait a minute I am real, I need a word with you......

Hugs...
Oluwa

JD
02-04-2008, 04:39 PM
Thank you both of you. It's really appreciated to have people who can both understand the illness, and also, the outward perception of that illness too.

The more and more I think about it, the angrier I am at my doctor.

I feel exactly like you were saying SaySusie, that if I go to the doctor complaining of aching joints, then of being constantly thirsty, then of being fatigued to the point of exhaustion, and etc. then he would give me anti-depressants (as they've tried to before) and tell me I'm fine.

I know that lupus is a reasonably uncommon illness, and it's even more uncommon in men, is it more common in older men than in younger men, or is it evenly spread uncommonly between younger and older men? (If you know what I mean...)

Sorry, there are so many questions and so much to learn about this, and obviously I can't trust my doctor!

Cheers,

JD

Oluwa
02-04-2008, 04:55 PM
JD,

As you can read Saysusie is our living resource and she seems to be absent. Wishing her wellness...and she comes back soon.

She has a wealth of info, and hopefully will be here to share it with you tomorrow. I on the other hand have none...

Have you been here? It notes some difference in age..

http://www.lupus.org/webmodules/webarticlesnet/templates/default.aspx?a=109&template=print-article.htm

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutindividualized.aspx?a=109&z=18&page=4

Hoping I've put you on the right path....

Maybe one of the guys will pop in...

Keep finding your wellness.
Oluwa

Saysusie
02-09-2008, 07:55 PM
Hi.....
I am here....and, for once, I was not away due to illness. My husband and I are very involved in this current political race and we were in Los Angeles for the democratic rally! What an inspiring event that was.

Anyway...to your questions about men and Lupus, I found these sites for you. If they do not provide the answers you need, please let me know and I will do more research for you:
http://www.lupus.org/webmodules/webarticlesnet
http://www.lupus.org/education/articles/lupusmen.html
http://www.lupiebin.com/men.htm
http://www.docguide.com/news/content.nsf/news/852571020057CCF6852572250056129C
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1004835

Peace and Blessings
Saysusie

Saysusie
02-09-2008, 08:06 PM
Oluwa :lol:
Thank you! I, sometimes, wish that I could stand outside of a hospital or doctor's office and shout.."Hey, are you just too lazy to look at us! We are real! We have Lupus! Lupus is real! Stop dismissing us, Stop treating us like we are psychopaths! WE ARE HERE!! DEAL WITH US AND HELP US!!
Short of that, I do my screaming and venting here :? I am happy that all of you allow me to do so and that you understand and support some of my frustrations!!

Peace and Blessings
Saysusie