I now think I have Lupus!!

[mothermac]

Hi guys,I have been to the doctors today as I really think I may have Lupus.If anybody hasn't heard of it it's an auto immune disorder that attacks the healthy cells in the body so causes some crap to go on.I haven't really got health anxiety to a serious level but I need some answers now as my health problems all lead to this conclusion.I explained to him that for about 10 years now I have had one thing after another and 9 times out of 10 they have found actual things wrong so it isn't all in my head.I have high blood pressure,kidney disease,anxiety,fatigue,joint pain and these are all symptoms of this dreaded illness.I went on the internet and really read up on this and made a very informative conclusion that it may be this.The doc really listened for once and said he is going to send me to a specialist to find out one way or another which is reassurring.I am very frightened though as it says it causes inflammation in the body and that includes the brain and sometimes it causes seizures which is one thing I have a very heightened fear of so I am really worried now.I had some throbbing pains in my head recently and I am scared now that it may be the inflammation,what does anybody else think?My husband said that I may as well put it from my mind for now as the tests are going to be a few weeks away as the doc hasn't even wrote the referrel letter yet so I ain't gonna get answers tonight but I am really fretting about this and it's making my anxiety worse-much worse.I have just got a job at Tesco which is going ok and if I have it things will have to change.One of the reasons why I decided to go to the docs is the fact that when I have been to work I feel really off and ill and other people just sail through pulling trolleys full of stock and going up and down stairs but I feel like death sometimes.,the doc said if you have Lupus you will feel like this so there you go.Does anybody on here know anybody with this thing or am I talking a load of nonsense? Hope I haven't driven anybody to distraction with my mad ramblings but I feel very distressed about this.

[girlrock]

Mothermac,

I know a few people that have Lupus and trust me, they live perfectly normal and happy lives! I know that you said you don't have a large amount of health anxiety and I am happy for you about that matter! However, if you spend the next days or weeks searching the Internet for information on Lupus then you WILL completely manage to convince yourself that you have it and you will feel worse than you already do. Internet searching is like our drug on here. It's extremely hard not to do it. But I'm asking you, please, that if your health anxiety isn't that high....please do not go Internet searching. I believe the Internet is what kicked my health anxiety into high gear...I do not want this to happen to anyone else. Your hubby is right...if you have weeks until you will find out for sure...then you have to try your hardest to put it out of your mind until then. I hope I was at least a bit of help, good luck hun..take care.

[itoldyouiwasill]

...it is never Lupus:lac: ....lol

Seriously though have you had an Anti Nuclear Antibody test done? This is a straightforward blood test and is a very good marker for a variety of auto immune disease. I actually tested positive for a Anti Smooth Muscle test earlier this year and was convinced I had an auto immune liver disease. All subsequent re-tests have been negative.

I am no expert on Lupus and I know you say that you do not have Health Anxiety that bad but I do know that Lupus much like MS and ALS is one of those diseases that Health Anxiety sufferers seem to believe that have at one stage.

[mothermac]

Hi guys,thanks for replying to me,and no I haven't had an anti nuclear test done yet or anything like it.The doc said that the specialist he is referring me to will do all these tests and more.I know that we can convince ourselves from the internet that we have a disease just by reading the symptoms and this is what I tried to explain to the gp,I haven't done this I just looked at the whole picture from the past 10 yrs and got a little alarmed as the characteristics of lupus are the same as what I have been feeling and suffering.I hope I am totally wrong and all my tests come back negative but you don't get pain and feelings like I have been getting for nothing so I think all will be revealed one way or another.

[williamsemciw]

...it is never Lupus:lac: ....lol

Seriously though have you had an Anti Nuclear Antibody test done? This is a straightforward blood test and is a very good marker for a variety of auto immune disease. I actually tested positive for a Anti Smooth Muscle test earlier this year and was convinced I had an auto immune liver disease. All subsequent re-tests have been negative.

I am no expert on Lupus and I know you say that you do not have Health Anxiety that bad but I do know that Lupus much like MS and ALS is one of those diseases that Health Anxiety sufferers seem to believe that have at one stage.

This post is very informative (Even the House Quote...)

Lupus is a disease that, to put it bluntly, can be doing ANYTHING or NOTHING. Self diagnosing it is completely useless, as there are pretty much no specific symptoms to it. At one point, all of us are afraid of this (I too, went though the Lupus stage of my anxiety.

Although anything is possible, I would not worry overly about it.

Hope you feel better.

[itoldyouiwasill]

Hi guys,thanks for replying to me,and no I haven't had an anti nuclear test done yet or anything like it.The doc said that the specialist he is referring me to will do all these tests and more.I know that we can convince ourselves from the internet that we have a disease just by reading the symptoms and this is what I tried to explain to the gp,I haven't done this I just looked at the whole picture from the past 10 yrs and got a little alarmed as the characteristics of lupus are the same as what I have been feeling and suffering.I hope I am totally wrong and all my tests come back negative but you don't get pain and feelings like I have been getting for nothing so I think all will be revealed one way or another.

As the later poster indicates, Lupus is a funny old thing as the way it presents and the symptoms throughtout the course of the disease vary so much...for one person it can be very mild and harldy problematic whilst for the next it can be very debilitating...just like MS hey!

What I have noticed is that people who become concerned about Lupus do so after a plethora of tests for other stuff come back negative and they become convinced that there is a physical explanation for their symptoms but that is just hasn't been discovered.

Now, of course, I'm not saying that this is you but I'm just saying that there are patterns that do crop up once the Health Anxiety sufferer comes to the Lupas conclusion. You could very well have Lupus but it is a rare (ish) disease and because the symptoms are so varied there really are a 1001 other possible explanations.

I demanded a test for Lupus as once I got over the MS worry I was totally convinced that there has to be a physcial explanation for my physical symptoms...I just refused to believe that anxiety could cause such a variety of weird and wonderful things...the Lupus test was negative but the positive smooth muscle test led to more worry and more false avenues when that was a red herring all along.

I have to stress that once anxiety becomes a chronic physical condition it can cause a huge amount of strong and powerful physical sensations that we are convinced must be the result of an actual organic ailment. The problem here is that we can spends months or even years chasing a diagnosis that just doesn't exist. I'm not saying that we should not make very effort to safegurad our health but we have to tread a fine line between responsibilty and obsession.

[agent orange]

I agree with girl rock. Googling is definatley a no go area in my opinion. There are some good sites out there, but equally there are some that are misleading and we being as we are might take the wrong information, and end up planning our funerals - so don't do it.
Meanwhile Mothermac try to put it out of your mind and do some positive things. If you are anxious then you will feel tired and have other symptoms.
Good luck.
Tony

[fairyloveheart]

I am now worried I may have this. Have you seen the specialist, what did they say?

[xfilme]

I was worried for a while that I had Lupus, but eventually I decided I hadnt because I read that it is usually accompanied by wounds that wouldnt heal. My wounds heal well so I presume that rules it out for me... but the info on google freaked me enough to make me believe it for a while.

[Trixie]

Mothermac,

I know a few people that have Lupus and trust me, they live perfectly normal and happy lives! I know that you said you don't have a large amount of health anxiety and I am happy for you about that matter! However, if you spend the next days or weeks searching the Internet for information on Lupus then you WILL completely manage to convince yourself that you have it and you will feel worse than you already do. Internet searching is like our drug on here. It's extremely hard not to do it. But I'm asking you, please, that if your health anxiety isn't that high....please do not go Internet searching. I believe the Internet is what kicked my health anxiety into high gear...I do not want this to happen to anyone else. Your hubby is right...if you have weeks until you will find out for sure...then you have to try your hardest to put it out of your mind until then. I hope I was at least a bit of help, good luck hun..take care.

There is a woman in my town who has it and she seems fitter than a lot of people I know.

[JMR]

I'm in a state about this, as I finally got my ANA blood results back and apparently the anti-DNA one which is specific to Lupus has returned as weakly positive. Just didn't dare ask the Dr anymore at this time, as I've rang the surgery every day for the past week, seen a Dr on Monday & I just can't handle any more stress and worry. Not eating or sleeping. I'm convinced I have Dermatomyositis which terrifies me more than lupus. I have a referral to Dermatology & I guess I'll have to take it from there with any further tests etc.
The Dr phoned me back with the results and said he had spoken to the immunology dept at the labs and they had concluded that the weakly positive result was NOT SIGNIFICANT. There are many symptoms over the past three years or so though that I've tried to sweep under the carpet and not gone to see the dr about, so now I'm worried that they don't know my clinical symptoms in context with the blood result.
I've started taking Fluoxetine since Monday, have lost half a stone in 8 days of anxiety, seeing a counsellor at the drs next Tuesday, & have now booked an appointment with another Dr at the practice for next Wednesday to see if I can get a chest x ray done, given that I was suffering with SOB most of last year. Also got to have a fasting glucose test due to the fact that my last result was 7.7 hope that it was anxiety that caused this?
I'm in a state.:scared15: