[Lill]

Hi all,
Sorry to be negative but I feel that I want to scream!!!
I had a positive Lupus antibody result following a thrombophilia screen in March this year, I was then asked to have another blood test in June and was supposed to get the results today, on arriving at the hospital I was informed I had been given the wrong appointment and it was for the wrong department, I now have to wait until Monday, this has all been going on far too long and I need some help aarrggg!!!!!
I am in pain or discomfort all the time, I cant sleep and think I may be developing restless legs, I have joined a gym to try to increase my level of exercise and reduce my ever increasing weight but find it tiring and difficult, I am seeing so many changes in myself both physical and mental that I hardly recognise myself anymore and I miss the old me! I feel soooo low and don't want to keep complaining to my family, I feel like a hypocondriac and a whinge bag!!!!
Has anyone else had to wait this long for a firm diagnosis? is it normal?
I also suffer with an underactive thyroid and between the two things I am so exhausted I could cry, I can't concentrate properly, keep making stupid mistakes and often can hardly string a proper sentence together because I forget the words I need to use, it makes me feel so stupid.
Please tell me I am not on my own, despite having a very loving family and some wonderful friends, they don't understand and I sometimes feel incredibly lonely and isolated.
Sorry to be so down but I can't often be this open and honest about how I feel.
Lill xxxxxx

 

[LolaLola]

Dear Lill,
Lupus is not diagnosed lightly,because it is a lifelong illness and has repercussions on things like Life Insurance. (So sort anything like that before a diagnosis comes)
Many of us waited a very long time for diagnosis, often due to seeing Docs who were not sufficiently experienced. Please remember not all Rheumatologists specialise in Lupus.I hope you have a good one.

Come here as often as you need, we are happy to listen. We all needed support when struggling to get diagnosed.
x Lola

 

[Katharine]

Hi again Lill,

As Lola said, a lupus diagnosis is never given lightly and it can take some time. For many of us that was a question of years and not months - I don't mean to depress you here.

Also, lupus is not diagnosed by blood tests alone and that diagnosis would usually be made by a rheumatologist as they are the specialists that deal with the disease.

When you say that you had a positive antibody test, which test is it sepcifically that you are referring to?

Katharine

 

[Lill]

Hi again Katharine,
It was desribed as a lupus antibody positive.
I think my frustration is born from knowing for a long time that something was wrong (not just the thyroid) and not being listend to, finally someone is listening and I just desperately want a specific answer and a plan of attack to combat it. I know I am being impatient but I just feel desperate and more than a little anxious because I don't know what will happen next!
I have a had a whole host of other tests carried out but I wont know the results of them until Monday.

 

[KarolH]

Hi Lill,

Sometimes it take a long time to get a firm dx of anything auto immune. It is not always as cut and dry as we would like it to be.

Monday will be here before you know it and you will have those results along with a dx hopefully so you can get started on medicine and the road to feeling better.

It can be frustrating for sure. Can your gp give you anything for pain? You should not have to suffer in pain while awaiting a dx.

It may be worth a call. Keep us posted and again, nice to meet you.:wink2:

 

[Katharine]

Hi again,

The reason I was asking was because there is a test called lupus anticoagulant which is not a test for lupus at all, but, confusingly, is a test for APS.

Another test is the ANA test which is not specific to lupus but is a general screening test which can show the likelihood of an autoimmune disease if it is highly positive and you have symptoms (some people can have a positive test for other reasons).

After that "screening" test other tests would be carried out which can help determine exactly which auto-immune disease it might be.

So, you see why, it isn't particularly clear to me which it is...

It is advisable to always ask for a copy of any bloodwork done then you can keep an eye on things and gradually learn about the tests as well as the disease.

Hope that helps a bit,
Katharine

 

[jacquip]

Hello Lill,

I'm sorry that your diagnosis is taking so long. I did not have that problem I was seen July 29th - had blood tests and biopsy and I was given the news August 7th......

I too feel all the pains and discomfort everyday and get tired of complaining to my family and friends about how i'm feeling. It is really very frustrating because they are supportive, but they don't understand, that's why I'm glad that i have this site as it makes me realise that I'm not alone.

Hang on in there!!!! Keep using the site.

 

[cad]

Hi Lill,
so sorry you are so understandably annoyed frustrated.
I 'm not sure when your first appt was but in my experience the system has not been too great to me either. See other threads, too long winded to explain!!
I had my first ANA Screen in Dec last year after starting to have quite bad symtoms. This was positive but with no specific antibodies showing. I saw rheumy first on 11th of April and was told he suspected Lupus, had further tests. I was given a follow up appt which was cancelled and finally got back to hospital on 14th April to be diagnosed with MCTD. All this time i was really ill with so many symptoms and already taking loads of pain killers and already on plaq.
I really understand how you feel. Sometimes the system isn't good enough and doesn't take into account how we feel and how worried we are.
Karol is right though just try not to stay to hung up on it and be good to yourself anf Monday will be here before you know it.
That was the biggest issue for me not knowing and also the lack of a treatment plan to focus on.
Good luck on Monday, i hope everythings goes well for you.

Take Good Care

Cassie

 

[Lill]

Thanks

Thank you so much for all your kind words and wishes, I will let you know on Tues how I get on.
Katherine, I will ask for copies of test results, I hadn't thought about it before because in the UK we are never given this information and I suppose we just stupidly accept it.
XXXXXXXXXXXX