Hello Everyone. I don't yet have a diagnosis... in fact I haven't yet dared to consult my doctor with this.

[beludesigns]

Did anyone have a problem getting a diagnosis that went on for many years before a doctor finally recognised it?

[Hidden]

Hi Beludesigns, I would say most of us, if not all of us have had to go through years of testing before a diagnosis is given. I think the doctors test, eliminate, test more, test deeper, etc. But I think the bottomline is that there are some many things with similar symptoms that they want to make sure they are careful in their diagnosis.

[beludesigns in reply to Hidden]

Thank you, Brookside Court. At least I now know that this bit of my story wouldn't be out of the ordinary! Boosts my confidence a little in terms of braving the long suffering looks from my GP!

[Hidden in reply to beludesigns]

🙏It May take awhile, so sit back and enjoy the ride. There’s not much else you can do. In the mean time, we are here for you.

[whisperit]

yes, that's quite normal! research suugests it takes 6-7 years on average between developing symptoms and getting a diagnosis.

you've probably already done so, but if not, it may help to use the guidance on the principal signs that suggest a diagnosis to make a diary of symptoms and then presenting that to your GP? lupusuk.org.uk/wp-content/u...

If they are reluctant to consider a systemic auto-immune condition, try to pin them down to giving an explanation for your symptoms. It also might help if you go with a specific request eg "I'd like to be tested for ANA"

Good luck x

[beludesigns in reply to whisperit]

Thank you so much... excellent advice all round! I'm yet another one who feels that a 'diagnosis' of CFS/ME has hindered everything else that has come since. 20 years ago a Rheumatologist said to me,... 'I'm sorry... I don't know what's wrong with you. I suppose it must be this Chronic Fatigue thing'. Didn't think for a minute he'd write it down as an actual diagnosis but he did and as far as my GP was concerned that was that (I've been through several other GPs since then. My symptoms got gradually worse and new ones emerged. Then deteriorated rapidly following a heart attack 6 years ago. Some things only emerge when I'm having a flare and other things have been permanent for some time.

Thanks again for your comments... gives me impetus to have one more go at getting some answers which actually reasonably explain my symptoms.

Take care.

[Olderkitten]

Hi, it usually takes a couple of years to get a correct diagnosis because it mimics so many other things. Please see your doctor and explain how you feel and for how long. Write it down so you don't forget anything. Let me know how it goes ok.

[Forgot2mention]

Oh how awful that you have had to wait for so long. My granddaughter was admitted to our local hospital in earl december , they suspected lupus but not experts, stayed there for 6 days then transferred to manchester childrens hospital, the specialist she is under diagnosed lupus as soon as he saw her. Thankfully see is slowly getting better. She had marks under her eyes from being small , but we all thought it was sunburn, we now obviously know what it was. Hope you get some answers soon

[beludesigns in reply to Forgot2mention]

Thank you so much for taking the time to reply, Forgot2mention (brilliant name btw!)

So sorry to hear that your granddaughter has Lupus but thank goodness she happened upon the right people to diagnose her quickly. Do you have Lupus? The thing that has kept me fighting to find a diagnosis (or diagnoses) that actually explains my symptoms is that I have twin daughters. They are 25 now and have shown signs of having whatever it is that I do have ever since they were little. I really hope I'm wrong but if I can get the right diagnosis it should mean that they don't have to go through what I have at the hands of disbelieving and unhelpful doctors. It's staggering that even today anything we don't understand still gets put down to *magic* or *madness*!

I really hope that your granddaughter continues to improve and receives the help and support she needs.

If you feel able/inclined to please let me know how she progresses. I will post again once I have news regarding my GP's response. Take care.

[Forgot2mention in reply to beludesigns]

Hi, sorry for the late reply. No i don’t have lupus, to be honest the only time i had heard of it was when selena gomez(celebrity) said she had it. I have psoriasis although not that bad since i have got older, waiting to have gallstones removed and according to my gp i have arthritis, again not that bad. . Various illnesses going on in the family, but all treatable with long term medication. Thanks for asking after my granddaughter, she is doing very well, she is itching to get back to school and wants to sit her gcse’s. It has been very scary as lupus affected her brain, it’s a weird illnesss it just seems to have gone as quick as it came. I will keep you informed of her progress.