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Hi, I am Megs. My Dad died about 7 years ago now and he died of peritinitis due to loads of polyps bursting in his body, but the underlyuing cause of it all was Lupus, before he died he had loads of 'water' bags all over his body, arms legs etc. After I told my doctor he told me that I , and my sisters, should get tested for lupus. I thought I had had the test, but after a short chat on this forum I don't think I have been tested properly as I am on no meds except vit B12 injection as my body does not absorb vitamins through my stomach. I am seeing a doc tomorow who is going to refer me to a rhumasmatist?? I think that's how you spell it. So we will see how that goes. I have been suffering for years with this and would love to get to the bottom of what it is I exactly have got! 2 of my sisters have been diagnosed with it. I will keep you all updated :)
I am 54yrs young btw :eek:)
 

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:welcome: Megs,

Good luck with your appointment tomorrow!
 

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Hi Megs,

I am sorry to hear about the loss of your father. It is always difficult to loose a parent.

It is a good idea for you to be tested especially with so many in the family diagnosed with Lupus. Keep in mind that your problems could also be one of the other autoimmune diseases. It is common to find one family member with say RA, another with Lupus and another with Fibro.

Good luck with your appointment.

Take care,
Lazylegs
 

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Hello Megs and welcome :)

The doctor that you should be being referred to is a rheumatologist. There is no basic test that would be carried out on children of lupus sufferers as nothing is likely to show in any test unless you were actually suffering from symptoms.

The first test that would be run is a basic screening test for auto-immune diseases, the ANA test. It is positive in +/- 95% of lupus sufferers but it is not lupus specific and can be present in other auto-immune diseases.

There are then other more specific tests but no one test can exclude lupus and consulting an experienced rheumatologist is essential. Your family history will also be of interest to the rheumy, along with your medical history and symptoms.

You don't mention your specific symptoms. If you haven't read it already, this link to the ACR classification criteria for lupus might be of help.

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

I hope that helps a bit, good luck at the docs tomorrow,

Katharine
 

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Hi Megs, welcome to the site. It was nice chatting to you, I hope that your appt goes well tomorrow. Do you keep a symptom diary? note fever, rashes, pain etc, this can help also photos of any rashes.

Take care

Deb x
 

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Welcome to the site and forum Megs

Good to meet you in chat :)

It sounds as if you have been diagnosed with pernicious anemia, not necessarily anything to do with lupus !
I am sorry about your dad and your sisters. You do have a slightly higher chance of developing lupus when it is in the family. Your GP can do a full blood count and and ANA test also urine test. The ANA is for antibodies that are common in lupus patients but it is not specific for lupus as higher levels than normal can be caused by other diseases.
I suggest you write out a full health history leaving nothing out as almost any problem can be caused by lupus. When you get to see the rheumatologist you will be closely questioned about previous and current health problems anyway You already have a note of relatives' health history but add any other blood relatives' chronic health problems if you know about them.

I suggest asking for a list of all tests that are ordered and getting copies of the results - we are legally entitled to them and our health records. It is really helpful to keep a file and a note of all dates and other info because it can be easy to forget. If your GP says he will refer you, you will need to make sure he has sent it off and then follow it up if you have heard nothing from the hospital

Symptoms are as important as blood tests in making the diagnosis. Let us know how you get on please and good luck

Bye for now
Clare
 

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:)Hi Megs,
Welcome, i too am a new comer and joined the site yesterday. Off work at the moment and looking for someone to talk to. I saw a doctor on Tuesday and now waiting to see a rheumatologists. Let us know how you get on. Love Anahita x
 

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Nice to meet you!

Hello!

I am new here too and find lots of good, sound advice and lots of encouragement also.

You did good getting to a doctor and I hope it went well and that you develop a good relationship with one who will log your history and help you to come to a diagnosis. I think rheumatologists have to be extremely compassionate as it may take years for some illnesses to be diagnosed.

I look forward to learning more with you!

Carly
 

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Hi Megs, so sorry for your loss. It must be scary for you waiting for these tests to be done. I am also sorry your sisters have been diagnosed too. You have been given lots of excellent advice on here, please take care. I am new too, and find this site a really valuable insight into lupus, good luck:)
 
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