Help with diagnosis ?

[joeyzoey]

Hi, this is my first time on here.

I have a lot of symptoms of lupus and keep getting told by doctors that I have antibodies in my blood but I do not have lupus.

My mum has lupus and my cousin and they both took years to be diagnosed.

Will this be the same for me as it is the fatigue that I hate the most.

I have put on over 2 stone in weight as every time I try to exercise even just by walking or cycling I seam to have about 3-4 bad days after.

I cycled with kids to school on Tuesday and have been knackered since.

Can any one give me any tips on getting the doctors to possible take my symptoms more serious because as the years go by the worse I feel.

[Maya23]

What are your symptoms? I was first diagnosed with M.E. 8 years ago, and eventually diagnosed with Lupus last year after 2 years of more tests. Before lupus showed up in my blood I got symptoms of fatigue/exhaustion, aches and pains in muscles and occasionally joints, headaches and migraines. The joint pain gradually got worse and I went back for more tests and eventually got diagnosed with lupus.

It's hard to exercise when you hurt all over, however I try and go for a walk 2 or 3 times a week. Sometimes I go swimming. Sometimes I find it easier to cycle than to walk. My feet are painful at the mo so walking is harder. Doing a bit of exercise helps to keep my mood up too.

My tip for the doctors would be write a list of symptoms and rough dates of when they occur. Bring a friend or relative with you to the appointment so they can back you up. Don't give up! I know it's hard (and I felt like I was banging my head against a wall for a while) but it pays to keep going and telling them somethings wrong.

GOod luck xx

[joeyzoey in reply to Maya23]

All my symptoms are what u have put down. As the years have sent by I have got gradually worse. I have ached all day today due to going cycling on tues. thanks I will try to persevere.

[cambridge]

Hi,

I am tryign to get a full diagnosis but have been told by both GP and hospital that lupus is known to show false negatives on many tests. IE - you have it, but the blood tetsts say different.

I started a diary and write down weekly what I have felt like. I have so many different symptoms and can feel so bloody awful, but I forget if I don't wtite it down.

[tintin49]

if you can try and see a specialist. its your right to ask for a second opinion and to go to a hospital of your choice.

at the moment after testing positive for lupus sle i am having all my tests done again and seeing a specialist lupus doctor at a specialist lupus centre. i did test posistive very quickly within months tbh but i recal the doctor saying that there is not just one test as such its all the symptoms and how many positives that you have in total. good luck and i hope that you dont suffer too much. life can be hard on lupus sufferers take care

[Coppernob]

Also, it's my (albeit sketchy) understanding that LA and other bodies are elusive, fickle little critters and come and go as they please. i.e. they can be there one minute, gone the next.

Also, I sometimes copyedit 'Lupus' journal and have certainly come across articles in there with patients who are diagnosed with Lupus, who DON'T have LA antibodies.

In other words - minefield!