[kirstytwin]

I have an appointment with the GP again next week.
I have been tested for lupus last year but was negative, but I tested positive just after I had a still birth in 1999.
Potted medical history is
I had what they called growing pains as a child
I was diagnosed as having epilepsy when I was 22, but this was later undiagnosed, though I still have attacks of petit mal fits
I have recurrant headaches
I am very sensitive to the sun, I burn very easily and it gives me headaches and hurts my eyes
I am constantly exhausted even when I have a good nights sleep, I am rarely awake after 9pm and do not get up before 7am, though usually am in bed by 6pm as i am too tired
I could sleep through the day easily, I wake up feeling exhausted
I get pains in my fingers occassionally and my legs give way
I have a rash over my nose and cheeks which is made worse by light
I am allergic to milk
It appears that my hair is falling out more than normal
I frequently feel sick for no reason
I have clinical depression that was made worse by having twins, they are now 8
I bruise very easily

I think that is mostly it, could it be lupus even though my results last year were negative.

I have waves of when these symptoms increase, but when they are at a low I am still extremely tired, to the effect that I cant cook the children tea or do anything with them. I joke that I am ok between the hours of 10am and 2pm.
I rarely go out in the evening as I just do not have the energy
Sorry to moan, but any advise on what to say to the GP next week is gratefully received.

Kirsty

 

[beci]

Hi

Hi Kirsty,

It sounds like you are having a tough time of it at the moment, it is hard especially with this illness! I have been going to the drs for the last 10 years with symptoms, and was made to feel like it was all in my head, in the end my GP referred me to a rheumatologist who has been fantastic and has assured me that it isn't in my head my tests showed negative at first but because of all my symptoms he started treating me, and I have been on treatment ever since. Persistance with your GP and they are not understanding maybe get a second opinion elsewhere. Everyone on here is really supportive and if ever you fancy a chat anytime feel free.

I hope you start to get some answers soon.
Beci
x

 

[Katharine]

Hi Kirsty and welcome

First off, don't worry about moaning. We all do at times and if you can't moan here then I don't know where you can.

I'm sorry to hear what brings you here but happy that you seem to have decided it is time to do something about your various symptoms.

It sounds like the "lupus" test you tested positive for was in fact the "lupus anticoagulant" test which is (very confusingly) not a test for lupus but for a condition that can be associated with lupus called APS (or Hughe's syndrome). APS can cause many of the problems you describe (for example seizures and headaches) and can cause problems in pregnancy.

Many of your other symptoms do indeed tie in with lupus (or another auto-immune disease) so it is definitely worth considering. That said, many docs don't take kindly to being told "I think I have lupus" so I would certainly be careful how I phrased it and possibly say something along the lines of "Do you think that something auto-immune might be going on?" Of course, you know your GP better than I do and know how he/she might react.

One condition does not exclude the other as about 30% of people who have lupus also have APS.

Another thing (on top of the list you have already made) that needs mentioning is whether you have any family members that suffer from lupus or any other auto-immune diseases.

The suggestion to get a referral to a rheumatologist is a good one. You need to try and find someone who specialises in auto-immune diseases (many do not).

Auto-immune diseases can be very complex to diagnose. There is no clear-cut way to diagnose through blood tests and an experienced rheumatologist is definitely worth seeking out (even if to eventually exclude the possibility). Most (almost all) GPs simply do not posess the specialised knowledge necessary to go anywhere near a diagnosis, especially in the trckier diagnostic cases.

If your rashe/s come out at any time, be sure to take a photo as they always tend to disappear just when you have that long-awaited rheumy appointment. Pictures can be very helpful.

Hope that helps a little,

Katharine

 

[pollianna]

Similar story here Kirsty, 10 years of symptoms and when my then GP panicked sp? ( I became gravely ill) and his multiple schlerosis test proved negative, he told me it was all in my head. he literally said those words. 10yrs later (after apparently negative ana and negative rheumatoid factor in April) I have shown positive for ana and rheumatoid factor.

I agree with all of the above, don't say I have lupus. Tell the GP you understand that you seem ok when your symptoms subside but if you could only get to see a rheumatologist then hopefully he will find an underlying cause. It worked for me with a new GP. Best of luck with it , let us know how you get on

ooooh, write down the order of symptoms and importantly what triggers it and when they subside

 

[cad]

Hi Kirsty,
Sorry for everything you've been through. Welcome to the site, htis is really is a great place for support and advice, it really helped me when approaching diagnosis to egt things straight in my head and how to relay symptoms to my doc etc.

Try to fond out exactly which test you have had and which were positive as this will help shed some light on what might be going on.

I really hope thihgs improve for you soon and you can on your way to diagnosis and treatment.

Take Care

Good Luck

Cassie

 

[*~aurora~*]

I have learned this from being sick:

-people who go after doctors for attention and those with manchausen's, etc. are not usually told they need to see a counselor because they are more careful about going to the doctor and go to many different doctors, and hypochondriacs often switch doctors faster than hair stylists!

-conversely, people with real physical disorders seem more likely to be told it's all in their head! I'm not sure I've ever known someone with a real, chronic illness who wasn't told that at one point or another-- thank goodness not everyone trusts their doctor 100%!

-somatoform and such disorders are far, far rarer than the physical diseases that are similar to them like thyroid, lupus, MS, etc.

-if you wonder it's all in your head, it's probably not.

Take care.

 

[purplesnowflake]

Hi. I woke up at 3 am this morning thinking the same thing- "it must all be in my head"as I am struggling to get a diagnosis of anything despite having similar symptoms to you. All my blood tests come back negative, but as I got up and my joints started screaming at me for moving I thought no way is this in my head!
Between 10 and 2 is definately my best time too.
I hope things get better for you soon. The people here are very friendly helpful and it helps to know you're not alone and you can moan anytime to people who understand. Good luck with your GP and I hope they help asap.
Have a big hug!

 

[kirstytwin]

Thanks everyone for your support and comments, It makes me feel better.
If I havent got lupus, I know that I do actually have something, but for me instead of people looking at you and thinking you are lazy, I would be nice to say actually there is a reason.

Kirsty xx

 

[Jace]

Krystin,

I can understand your feelings. My son Jace is 16 and for 2 1/2 years we have been trying to figure this out. He has all the systoms of Lupus but the ANA keep coming back negative. Any help anyone has would be greatly appreicated.

Dar

 

[Katharine]

Hello Dar and welcome to the boards

I'm sorry to hear that your son has been having so many problems. Some people do have negative ANA or ANA that becomes positive later on. There are a few different things that can maybe be done but it depends on what you have already done and who you have seen.

May I suggest that you start a "new" thread and introduce yourself and tell us your son's story there. That way your story doesn't get "lost" in someone else's thread.

bye for now,
Katharine

 

[Jace]

Katherine,

Thank You so much for your help. Not sure how all of this works. I will start a new thread and explain Jace's ordeal.

Dar

 

[onetay]

Kirsty,
You should tell him/her everything as they can not treat you if they don't have the whole picture. Start by doing just what you did for your thread and think if there is anything you might of forgotten, I know how easy it is to forget thinks that you ment to tell the dr. but just forgot. I keep a journal now and when somthing new comes up or something old happens agian I make a note of the time,date,what I was doing when it started again, and if it is new, old, or similar to something that has happened before. I think this is a lot to remember on the spot at the dr. office and that is why I have went to writing it all down. We can not blame the doctor when it is us that do not tell all that is going on with us even if they do think we have lost our minds lol.

 

[Pink Pearl]

Tammy gave you a very good suggestion. It is SO important for the doctors to have an accurate account of what happens, when, how, and how long. When we have a flare and have brain fog, we are lucky to make it to the appointment! To heck with anything else!
Take your journal, make a copy, or the night before sit down and make a chronicle of your journal. Take that to the doctor with you. I keep a copy of all my doctor notes in my computer and the copy I take to the doctor is for his/her use. My docs keep them in my chart for their info if questions come up.

Going in prepared makes the best use of the time for both of you. It eliminates the "twenty questions" that is usually the case.
Take a note pad, spouse, friend, in with you or a small recorder if you need help remembering what went on with your appt. By taking notes, you both have the same info from which to work. It will also show your doctor you are serious about getting well and making the most of both your time.
Also, find out what you need to be concerned about and what he needs to know about directly, not later. It helps us to care for ourselves best when we know what to look out for.

I sure wish 20 years ago I had known what to look for and what to not worry about. It would have saved a lot of missed things and worry over nothing.
Good luck,
Sally

 

[kirstytwin]

Thankyou both, I have started to write down how i feel and when my symptoms occur, so i will be armed when i go back to the dr 19th march.

Kirsty

 

[LolaLola]

Hello Kirsty,

My ANA was spectacularly uncooperative for years despite being obviously ill.
It is not in your head-so get the care you deserve!
x lola