Lupus

Brera15 · Post by **Brera15** » Thu May 10, 2007 1:01 am

Can you sense if I have Lupus or what is wrong with my health?

I also posted this in pyschic before I came across health.

Gem · Post by **Gem** » Thu May 10, 2007 12:27 pm

Hi Brera,

Welcome to Mystic Baord.

Lupus is often called the illness with many faces, the criteria of diagnosis is very hard too. Have you asked for or had blood tests? Have they tested for ana and anti-dna or anti-ro and sm?

Obviously only a doctor can diagnose an illness but there are many self-help organisations that can give advice and share their experiences. A very good one is http://www.thelupussite.com/forum/index.php?act=idx  which is the UK board of www.uklupus.co.uk
there is a USA one too,  and many all over the world http://www.uklupus.co.uk/lupuslinks.html

Read and learn all you can and go from there. If it is Lupus then its not the end of the world , there are many people that have found different ways of curing the disease themselves, after all an auto-immune response can be turned off

Best wishes and good luck, look forward to hearing from you xxx

Brera15 · Post by **Brera15** » Fri May 11, 2007 2:31 am

Thank you for the support, I have been seeing a GI doctor for a year! And things are moving so slowly because my physician is very unproffessional and seems to enjoy making my and my family's life a living hell, and my Mom takes no action in switing her! But, I was supposed to go to a rheumatologist a month ago, but again, the doctors for some UNKNOWN reason have not finished the referal!! I'm trying to figure out what kind of lessons I'm supposed to be learning from this seeing as how I've been waiting in pain for so long now!

The only blood tests she has got are low CBC, but sometimes its normal, Anemia, and high SED...etc.

I really want to get more tests ASAP!!!! But I can't cause I'm only 15

And I am very sure I have Systemic Lupus because I have so many symptoms, even other complications that can be caused by it throughout my life...it also runs in the family, but hasn't for 2 generations.

Thank-you!

flight _of_angelwings · Post by **flight _of_angelwings** » Fri May 11, 2007 7:29 am

Hi I can totally understand your frustration with the symptoms and the necessary period of waiting.  I too at fifteen suffered horrible symptoms and pain.  It took 10 yrs for them to finally truly listen to what I had to say and finally diagnose my symptoms as an Auto Immune Disease known as Ankylosing Spondylitis.  If you have an Auto immune disease it does open up the possibility of another auto immune disease and comes along with a whole set of other conditions becuase of it.  Auto Immune diseases can not be turned off, gee I certainly wish they could but the truth is they can only quieten them down like a hibernation.  There are auto immune suppresants such as Remicade and Enbrel but these are used for severe cases and need stringent qualified requirements met before treatment is started.  any treatments that slow the immune system does have its dangers especially if the family has cancer in the genes etc.  Its often not a good idea to slow your immune system unless the diseases signs and symptoms outweight the risks.  

Also with Lupus there are different levels such as some that effect the skin mostly and then others that can effect the organs.

The truth is that with Lupus it is only diagnosed after a history of complaints as one test alone can not diagnose this condition.  so generally they will want reactive blood tests, symptoms and a history of the progress etc....Lupus also can lie dormant for some time hence it is undiagnosable so you do need to be in flare to receive dx.  

Just try not to let it get to you.  For so long I had doctors telling me the pain was all in my head and that I was too young to suffer crippling back pain etc....so after some time i started to think that maybe I was over reacting maybe I was complaining.  then it would become excrutiating again and I wouldnt be able to walk and I would do the rounds of the doctors again.

You need to keep a diary this is important and may help you get to an understanding of what you are going though.  Write down any symptoms you get each and every day.  Jot down anything you have done in that day that was unusual, anything you ate and what any pain may be like on a scale of one to ten.  Write down skin changes as lupus is very known for markings on the skin etc.  Write down also on a scale of one to ten your nausea, and your fatigue levels.  This way when you see a doctor you can take this with you to see if theres a  comon thread.

If you have any questions or would like to chat pm me as I have done these rounds for years.  I'm currently also being tested for lupus, I have a good rheumatologist and doctor who I see and regularly have bone scans and bloods taken.
I have a medical background having worked on ambulances and been an instructor also so should you wish to chat pm me and I can hopefully help explain any queries you may have.

Goodluck

Gem · Post by **Gem** » Fri May 11, 2007 11:59 am

Hi Brera, although it is very unusual to get a firm diagnosis at 15 for SLE or any form of lupus, with your history I would expect the doctors to be looking for it, but two generations ago lupus was a very serious disease, rarely diagnosed too, but now things are much better as we know more about it

The only blood tests she has got are low CBC, but sometimes its normal, Anemia, and high SED...etc.

High sed is a clue, but did they really not take any ana's or anti-dna's? that is strange.  You will need a rheumy's advice and also visit those sites I posted.

Personally I really don't agree with Angel saying

Auto Immune diseases can not be turned off

 They can most definately, there is hope. But if we fall into the trap of becoming a victim to whatever disease then our bodies accept and stop fighting. Especially at such a young age you will find that hormonal changes will be playing a drastic part in your symptoms and like when going through the menopause, any disease can be worse at that time.

It must be very frustrating, but please don't worry, getting stressed will make anything worse, and yes, I know that saying that just makes us more stressed lol, but it also means we must rest and take care of ourselves. Diet can help enormously. You say you were with a GI doc, did you have digestive problems too? Many diseases symptoms can mimic lupus, so that may be a clue.

Have you tried talking to your mum again?

flight _of_angelwings · Post by **flight _of_angelwings** » Fri May 11, 2007 12:12 pm

Where have you heard that it is possible to turn off an auto immune disease without compromising the bodies ability to fight off other diseases.   There is no treatment I know of that specifically shuts down one part of the disease. To slow down the immune system the whole lot goes.  I would be especially interested as after living with this for many many years I am and my Rheumatologist have not heard of this claim so  I would like to know if it is a new research implemented that may not have yet reached our shores and should be something I should be looking into.  
Personally it is much easier to manage lupus or A.S by using NSAID's, diet and a healthy lifestyle than it is to slow down the immune system or cripple it for life and never then have the ability to fight infection or cancer.  Or are you just mixing up the bodies natural ability to go into remission with these immune disorders?

Gem · Post by **Gem** » Fri May 11, 2007 1:56 pm

flight _of_angelwings wrote:Where have you heard that it is possible to turn off an auto immune disease without compromising the bodies ability to fight off other diseases. There is no treatment I know of that specifically shuts down one part of the disease. To slow down the immune system the whole lot goes. I would be especially interested as after living with this for many many years I am and my Rheumatologist have not heard of this claim so I would like to know if it is a new research implemented that may not have yet reached our shores and should be something I should be looking into.
Personally it is much easier to manage lupus or A.S by using NSAID's, diet and a healthy lifestyle than it is to slow down the immune system or cripple it for life and never then have the ability to fight infection or cancer. Or are you just mixing up the bodies natural ability to go into remission with these immune disorders?

I am really so sorry if you have taken any offence. I posted with good intentions, from my experiences. I know it can come as a bit of a shock if someone gives a different opinion of things so close to one's heart.

I did not mention anything about compromising the bodies ability to fight off other diseases, which of course is what immune enhancing and altering drugs do. I was talking about healing, try searching 'cure lupus' or ms or diabetes or RA, there are many people that have managed to cure themselves. An auto-immune  response is the body reacting to the body.  Healing therapies such as reiki and qi gong can change the energy of the body, the mind can alter the body and make us ill and weak.  So surely it isn't that hard to believe that we have the ability to change things and heal ourselves, if we want to be healed?

Doctors do not know everything, and I will emphasis that neither do I, but, I do know that once anyone falls into the role of patient and their mind accepts that a doctor has to be right because he is a doctor, then the mind and body will withdraw and accept they are ill with no point in trying to fight and stop the illness or disease. Energy follows thought, the power of positive thinking and so on. Many people call these incidents miracles but if they are... then miracles can and do happen every day !

Diet has an immense part to play in the healing role with any illness, as does fasting. Using NSAIDS can lead to more gut problems long-term than inflammatory relief.

Lupus itself can go into remission through careful management and avoidance of uva and b but that is not what I am talking about either. Investigate the complementary and healing therapies and teach your mind to fight back.

MoonGoddess · Post by **MoonGoddess** » Sat May 12, 2007 6:29 am

When I was younger I had a friend who was diagnosed with Lupis.  She had red blimishes across her cheeks and the bridge of her nose.  She told me that there was no cure for it and the desease could prove fatal.  I have lost contact with her so I do not know how she has faired.

flight _of_angelwings · Post by **flight _of_angelwings** » Sat May 12, 2007 8:30 am

I am really so sorry if you have taken any offence. I posted with good intentions, from my experiences. I know it can come as a bit of a shock if someone gives a different opinion of things so close to one's heart.

I did not mention anything about compromising the bodies ability to fight off other diseases, which of course is what immune enhancing and altering drugs do. I was talking about healing, try searching 'cure lupus' or ms or diabetes or RA, there are many people that have managed to cure themselves. An auto-immune response is the body reacting to the body. Healing therapies such as reiki and qi gong can change the energy of the body, the mind can alter the body and make us ill and weak. So surely it isn't that hard to believe that we have the ability to change things and heal ourselves, if we want to be healed?

Doctors do not know everything, and I will emphasis that neither do I, but, I do know that once anyone falls into the role of patient and their mind accepts that a doctor has to be right because he is a doctor, then the mind and body will withdraw and accept they are ill with no point in trying to fight and stop the illness or disease. Energy follows thought, the power of positive thinking and so on. Many people call these incidents miracles but if they are... then miracles can and do happen every day !

Diet has an immense part to play in the healing role with any illness, as does fasting. Using NSAIDS can lead to more gut problems long-term than inflammatory relief.

Lupus itself can go into remission through careful management and avoidance of uva and b but that is not what I am talking about either. Investigate the complementary and healing therapies and teach your mind to fight back.

I have not taken offence and in reply to this quote from you

I know it can come as a bit of a shock if someone gives a different opinion of things so close to one's heart.

As I have faced many different views and thoughts off other people whom give their opinon over the last many years so dont worry and there has been no offence taken. I was just making sure that the poster was receiving accurate information. dont worry I'm not at all concerened I see many views from others regarding others disabilities and mine each and every day. If I was shocked at each and every opinion I wouldnt have time to live.....lol

I am very much aware of the healing holisitic therapies I have been using them for many years now to help combat with the progresssion of the disease and to help with pain and I must say Reiki is the only thing I have yet to find that will help my pain. I also do believe you need to find the right practitioner too to give this to you as I respond much better to certain master than others.

I'm very knowlegable with the ins and outs of the disease both scientifically, medically and holistically regarding approach to treatments, management and diagnosis. Theres nothing that has not been looked at tried and tested.

For all:

When it boils down to it any disease that is degenerative, fatal or life limiting it is always important that the medicine side is followed and we have to trust in that our doctor is doing the right thing by us. This also means that their advice must also fit with us and that we also do the right thing by us. We must use holistic therapies to complement modern medicine and so on and not one should not go without the other. Its all about balance and research and a positive frame of mind.

There also must be care when approaching others with the views that if they think well, act well and do all the right things spiritually and holistically that they can be cured aslong as 'they' really want to. This is a time bomb as others like me that trust and do the right things and have faith and reach out to all sides of therapy can and will have times that when we are told we dont believe enough or are not curing ourselves then must feel that we are self harming by not allowing ourselves the ability to get healed. I have been told by other all well intentioned people that If I had enough faith in me and 'wanted' to be healed I could. That can be a very hurtful suggestion to someone who truly wants to be able to walk and hug their kids.
With this new wave of positive thinking does mean it is leaving some people with a disability a target to others whom feel that we must want to be like that as we have not taken the power to cure ourselves with happy positive thoughts.

flight _of_angelwings · Post by **flight _of_angelwings** » Sat May 12, 2007 8:36 am

Hi moongoddess,

Sorry to hear about your friend.  Lupus varies gretly in its severity.  some people can get by without many complications at all and others are effected rather severly.
I do hope your friend is doing ok.  Have you thought about looking for her on the school website here in australia.  I have been in contact with friends through it and its a great site to just look into another see how they are going and be happy with that if thats all you want too.

MoonGoddess · Post by **MoonGoddess** » Sat May 12, 2007 10:50 am

flight _of_angelwings wrote:Hi moongoddess,

Sorry to hear about your friend. Lupus varies gretly in its severity. some people can get by without many complications at all and others are effected rather severly.
I do hope your friend is doing ok. Have you thought about looking for her on the school website here in australia. I have been in contact with friends through it and its a great site to just look into another see how they are going and be happy with that if thats all you want too.

 You know I was once a member of that friends united site and didn't think of her then but I guess this has reminded me of her I might join up again

nashota · Post by **nashota** » Sun Jun 17, 2007 12:27 am

Hi MoonGoddess.. my sister has lupus.. and has had it for approximately 20 years.  

samsjr · Post by **samsjr** » Fri Jun 29, 2007 1:09 am

my mother has lupus and in some cases doctors have found it to be hereditary, if so it skips a generation and goes to the next. my mother didnt find out she had lupus until her mid 40's, the longer the person waits to find out the worse symptoms become. if my mother stops her medication the doctor said she would surely die. she has many problems and complications. she worries since im her last born child that there may be a chance that i may get it. if you are someone who believes that you have lupus and you are young then it is important to get tested young because many complications and other disorders with the immune system can be offset or never appear if you start treatments young. along with things like lupus my mother has also a downed immune system, anemia, and rheumatoid arthritis; along with a couple of other problems i cant pronounce yet alone even spell.

Gem · Post by **Gem** » Fri Jun 29, 2007 12:46 pm

Hi Samsjr, welcome to Mystic Board.

I would suggest that your mother find a new doctor as soon as possible. A doctor with an attitude like that can do no good to anyone. Have you looked a these websites? They are brilliant and offer hope and understanding as well as support. Lupus is not the killer it once was. You sound very frightened, Perhaps it might help if you asked a few of the experts on the lupus site about the hereditary side of things and clear up your fears?. They are up to date and very friendly

http://www.uklupus.co.uk/

http://www.thelupussite.com/forum/

samsjr · Post by **samsjr** » Fri Jun 29, 2007 2:37 pm

thanks you gem, i will check that out. my mother has gone through a few doctor. im not really afraid, but just concerned.

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