[2cay2]

I am going to take my (very long ) list of symptoms to the doctors next week and ask to see a rhemy. If she tries to suggest there is no need, I would like to ask for her to run some initial tests. ANA would be the main one I believe (I'm new to this) but what else could/should I ask for?

I would like to have the possiblity of lupus thoroughly checked out.

I am actually going through one of my healthiest times at the moment - although my hands are getting bad again - would this make a difference to the test results?

Thanks in advance

 

[2cay2]

I have just found this list on the factsheets.

ANA
DNA antibodies
ENA
Antiphospholipid antibodies
Complement
+
full blood count and biochemistry
+
protein and bacteria in urine

Are these all the ones I would need?

 

[Clare.T]

Remember you are not going to mention 'lupus' ! That tends to go down very badly because if there's one thing doctors don't like it's people diagnosing themselves.
You can mention some sort of chronic arthritic disease perhaps autoimmune preceded by saying you want to get to the bottom of constant health problems and are wondering if there might not be one cause or causes for them. You would like a thorough check up as a start

The special tests for autoimmune connective tissue disease like lupus are not usually done by GPs. The screening test is the ANA which isn 't specific but if it is positive that goes a long way towards getting a referral. The consultant does further tests. The GP would probably do rheumatoid factor, RF as well. It may not be easy to precise all this to her as she might think you are telling her her job

Here's another list with stars against those that I think a GP would do as part of thorough basic health check.
*Albumin ANAANCA (antineutrophil cytoplasmic antibodies), P-ANCA (perinuclear) C-ANCA (cytoplasmic)Anti-Cardiolipin (Anti-Phospholipid)Anti-DNAAnti-Ro/SS-AAnti-Sm antibodies *Blood Urea Nitrogen (BUN)*CBC Complement studies *Cholesterol ? CPK *Creatinine *Creatinine Clearance*Differential Neutrophils, Lymphocytes, Monocytes, Eosinophils, BasophilsENA (Extractable Nuclear Antigens)*Erythrocyte Sedimentation Rate (Sed Rate, ESR)Immunoglobulins (IG) *Iron *Rheumatoid Factor*White Blood Count (WBC, Leukocyte count) You could also mention thryoid and B12 - I am not sure if that would be routinely done, or if the iron would be enough.

Something else that would be worth mentioning - and you can hardly get round naming the disease in this case - is coeliac disease gluten intolerance. I think you mentioned gluten and gastric problems and I suggest you google dermatitis herpetiformis. Go to Images. This is a skin rash, little blisters that can be associated with coeliac. See if the pictures look like yours.

Please note that I am not diagnosing you, it's just an idea that crossed my mind. You can also read up about celiac and see if the symptoms bear any resemblance to yours.

Bye for now

Clare

 

[2cay2]

Thanks for the reply Clare, it is very much appreciated.
I'm going to the drs in the morning and have decided to just present the two main probs I have at the moment. 1, the 'thing' under my eye lid (a friend looked and said it looked like a wart or flat lump - a non red spot) could be anything ofcause, I haven't had this prob before. And 2, my hands as they are constantly aching and I know how bad they can get :sad: . I am hoping if she doesn't suggest it I can ask to see a rhemy for just them? and then present my list to him/her.
I guess I will just have to play it by ear!
I wont be going in saying "I've got lupus!" :rotfl: I'm not a 100% convinced myself anyway, but so many thing do add up so I would like it ruled out at least.

Thanks for the coeliac/rash conection. I never realised there was a rash reaction with it too. I can eat gluten now, though I do limit it. I had to steer completely clear of it for 3 years or I would get sick. I can't remember if my arm rash at its worst and that period coincided, it is possible. I looked at the pics and there are similarities though I couldn't say for sure they are the same.
At the moment I'm having problems with milk so I haven't had that for over 6 months. Interestingly my skin has never been better lately as well...........oh, my poor Dr!!! :lol: No wonder they never know what to do with me! I have just convinced myself that sticking to the two main issues at the mo is a good idea, I will only bring up other things if she asks.

Can you tell I am not looking forward to this :lol: I will let you know what happens. I will probebly have more questions too ....sorry

 

[Lily]

Hi there,

I just wanted to wish you well with your appointment :luck: Clare has given you good advice.

I looked at your list of problems too, just thought I would mention that Celiac Disease can have joint pain as a symptom also. Here's a bit more info on celiac:

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/#2

Let us know how you get along?

love
Lily

 

[2cay2]

I've got to go any minute, so this will be a quicky, but just wanted to say that it is interesting to see celiac disease has the joint pain. I didn't have a comp in the years I couldn't eat gluten, so never got to learn thses things. I had no idea it was a life long auto-immune desease. I will deffo be reseaching more! I'll follow your link later Lily.
You guys have been wonderful and I thank you from the bottom of my heart

 

[Joandublin]

Good luck! Stay determined!

Joan:rose:

 

[2cay2]

I have just got back...I saw a locum, which was a relief! She has given me anti inflamitory drugs for my hands. And I pressed on a little and managed to get some bloods done.
These where what was on her list:
FBC
Rh factor
amlo? antibodies
anti-gluten? antibobies (for coeliac disease)

? means I can't read her writing :hehe:

I will try and find out what these tests are and post back.

Edit: link for FBC http://www.labtestsonline.org.uk/understanding/analytes/cbc/test.html
Link to Rh Factor http://www.risktutor.com/demo/june_99.html

 

[halfpintfl]

Hi there, I would hand him my list of aches and pains, and then ask him "what can we do to start to get to the bottom of this? There is no quicker way to get a dr. to hate you that to Tell him what you want done. He went to school to be the dr. and he knows it, and we are the lowley patient. When he suggests something, just smile and say" Oh, that sounds like a good idea" Remember, he thinks he is god, let him.

 

[2cay2]

Hi there, I would hand him my list of aches and pains, and then ask him "what can we do to start to get to the bottom of this? There is no quicker way to get a dr. to hate you that to Tell him what you want done. He went to school to be the dr. and he knows it, and we are the lowley patient. When he suggests something, just smile and say" Oh, that sounds like a good idea" Remember, he thinks he is god, let him.

:lol: you are so right! I think I got the balance right and managed to get some blood tests done without mentioning any specific illnesses, just some symtoms! It is a start....
I have just ordered some urine test strips so I can test that myself. That way I can tell them if anything shows up, or just not say anything if it doesn't! It's not something I would normally do, but I've always had protein in my urine when it has been tested in the past, which I have recently realise could be a possible problem. So at least I can keep an eye on it myself for a while before I harass the drs with it :lol:

 

[Clare.T]

Hello
It sounds as if that went really well - what a stroke of luck getting the locum

Maybe the first ? was anti endomyosial or something like that, and the second anti gliadin. The first is for coeliac too. I thought the first might have been ANAF or FANA but it doesnt look like that does it. If not it's a pity she didn't throw that in.

The RF factor isn't much indication for lupus because only about a third have it.

I have a vague idea that if you have been on a gluten free diet the antibodies might not show up, but I could be wrong. The usual recommendation is not to go gluten free until tests have been done

Bye for now

 

[2cay2]

I haven't been on a gluten free diet for years so that's lucky! I do limit my intake but I have had loads of crakers over xmas, which I have only just finished! I don't get the sickness now which is why I started eating it again, but maybe you are right and the joint pain and rashes are the effect it has on me now! I really don't know enough to make any educated guesses! I will be going back next week to get the results and I hope to get a referal to a rhemy if nothing shows up on the tests. Who would I see if it was Coeliac disease I wonder?

It is so helpful to be able to share here. Huge thanks for letting me ramble and for sharing your thoughts :thumbs: :bow: I really am hugely greatful.