Diagnosis

[Dani_7]

Hi all! I was just wondering, is it always years before you get a diagnosis? And how bad does it need to get before they officially diagnose me? Any advice would be really helpful X

[LucyJean]

Hi hon, no, quite often you will get an instantaneous diagnosis. It will depend on what physical symptoms you present with, your past medical history and what your blood tests and other relevant investigations reveal. Sometimes it is blatantly obvious what is wrong.

Quite often the delay in diagnosis is with the GP who isn't so good at spotting the patterns of something more rare such as scleroderma, but when you see a Rheumatologist there are standard symptoms that they will be looking out for.

It never feels good when you are living in limbo land with bizarre symptoms that no one gives you a label for, but on the other hand you could say that not getting a diagnosis is a good thing because it means your symptoms are not so clearly a severe disease picture.

There can be overlap between the symptoms of some autoimmune conditions and some people will have symptoms that fall in various camps. For example, many people have overlap between scleroderma and lupus, or sjogrens, and many people have myositis or inflammatory joint problems...so present with a mixed picture.

These rarer autoimmune conditions are complicated beasts to manage (and live with!!)

I hope that makes sense.

I believe there was a similar post about a month ago you might want to have a look for.

Lxxx

[Dani_7 in reply to LucyJean]

Hi LucyJean

Thank you so much for your reply. Yes, I think because I am in Limbo at the moment it’s making me anxious not knowing what is to come. But I really appreciate your advice, thank you and I hope all is good with you X.

[frillyhilly]

Hi, as Lucyjean mentions, the problem is often more about getting referred to the Rheumy than anything else. From my memory my Rheumy had a straightforward diagnosis path once I met him. The problem I had was that my GP associated my problems with another ongoing issue to start with - so a 6 month delay before the Rheumy - hey-ho!

Try and find a GP in your practice you feel comfortable with. Try and get a double appointment so you can have a proper talk.

Keep records/notes/a diary of your symptoms for a few weeks. You want things like what is happening to you, how much it hurts, what you can/can't do at that time, what starts the problems off, etc. It's also ok to record things that help as well.

When you see the GP try to avoid referring to what has been going on "for ages". So many of my older friends do this and it can lead to long term incorrect diagnosis. For instance one of them kept being treated for indigestion until I pointed out that what she was saying was wrong with her now was nothing like what used to be wrong with her. I suggested she just tell the GP what was currently wrong and not use the "my symptoms are worse" words - she did this and within a few minutes she was diagnosed with IBS - and is so much better than when she kept telling the GP her long term indigestion problems had got worse again.

So once you are in there with your notes and info, try using words like "I really need your help", "I don't know what to do", "I'm finding it really hard to cope or sleep or sit comfortably", etc. Hopefully this will let the GP see how important his/her help is to you and get things moving. Also keep a look out for any symptoms they are particularly interested in. If you know what the GP is interested in then you can monitor it yourself and if it gets worse you have another way of approaching them again

I hope you get the help you need very soon. All the best, N. xx

[Dani_7]

Thanks Frillyhilly, I think I’m going to make an appointment with my GP later and have a chat with them. Work putting unnecessary stress on me by requesting my medical records isn’t helping either, but I’m glad that they are so they can see it for themselves. Thank you again and I hope all is good with you X.

[phubley]

I was diagnosed about 20 years ago. I researched my symptoms online and it seemed to me I had either scleroderma or lupus. Because I had no firm diagnosis and was unlikely to get one from my male doctor (an 'it's all in your head' type of person), I asked for a referral to a rheumatologist regarding my arthritis.

He questioned why I would want to see a rheumatologist and I said I was interested in discussing my arthritis' disease progression. I was sure he would scoff at my 'self-diagnosis'. He seemed to want to deter me by saying it would take up to a year to see a rheumatologist; I told him that was fine. I got an appointment about 8 months later.

I documented all my concerns and why I thought I might have one of these auto-immune disorders. I faxed my findings to the rheumatology clinic about a week before I was to see her, thinking that since visits seem to be so short and I was worried I would forget to tell her everything, it would give her time to review my information.

At the visit, I got the feeling the rheumatologist thought I might be a hypochondriac. She said I looked 'fine' and could see no evidence of the disease. I was getting ready to leave when she said 'just in case' she would send me for a definitive test, an anti-centromere test I believe, to determine if there were markers for scleroderma. There were, thank goodness, so I was finally 'heard'.

I've been seeing her annually for about 20 years now. She sees me annually and schedules annual tests for heart and lung function and had me enrolled in a long-term study which just recently closed. I've had Rheomacrodex injections and light therapy for my hands, none of which were helpful. My symptoms have gotten worse over the years but I am still mostly functional. Sometimes the hardest thing is to be 'heard' and get access to a rheumatologist. I'm in Nova Scotia and we don't have nearly the numbers of health professionals we need so I consider myself one of the lucky ones.

[Dani_7 in reply to phubley]

Thanks Phubley

That’s the problem isn’t it, because we look ‘fine’ we aren’t taken seriously. I’m really glad you are getting the care and the understanding that you need now though 😊.

Thank you so much for your advice and I hope everything is all good with you X.

[Magsterly]

Frillyhilly gives good advice. However just know that they will gladly put you on anti anxiety drugs or sleeping pills or “pain” meds that are supposed to treat depression with those true statements.

If you live near an acupuncturist I would suggest a highly skilled dr in Traditional Chinese Medicine. If you can afford it - give it 8-10 treatments. Look up his or her reviews and look up Google info on research regarding TCM.

Western Medicine has its place. But TCM is being found to have had it ‘right’ for thousands of years.

There is a website NIBH that does double blinded studies of TCM. Very compelling!!!

[Dani_7]

Ooo interesting! I would never have thought of if acupuncture before! Thanks Magsterly I will have a look into it! I hope you are well X.