Waiting for ANA results

[MariaK71]

I'm 46 and have been having spells of unwellness throughout my life. At 18 I was in hospital for weeks with HSP & ongoing kidney issues which got better in time.

I was told that it was quite rare to get HSP as an adult & I would never get it again. I've had many bouts throughout my adulthood some more severe than others, sometimes with kidney involvement, sometimes not. In addition to that I've had terrible problems with joint pain and stiffness. Various rashes on & off which I'm told are just reactions to something. I've had episodes of extreme exhaustion amongst numerous other symptoms.

In 2012 I was very unwell, pretty much bed bound for weeks, unable to walk with the pain, had a stay in hospital & was referred to a rheumatologist. I waited weeks to be seen & when I finally got there the chap barely lifted his head off the desk and I was in & out within about 5 minutes!

I was so demoralised & thought that I was obviously wasting everyone's time. Symptoms have persisted over the years but I felt so deflated I've never bothered going back to the doctor with the minor problems (mouth ulcers, sore eyes, joint pain, swollen joints, tiredness, anxiety, sleepless nights etc).

Over the past year or so the joint pain is ever present, I have terribly sore hips, back, hand & elbow pain. I went back & was referred to a physiotherapist for a "frozen shoulder" at one point. Again waited for the appointment, was told it wasn't a frozen shoulder then was asked if I was depressed because that can effect our overall wellbeing. I was incredibly tearful, mainly because I was in discomfort & nobody seemed to believe me.

This was then followed by weeks of swollen joints, joint pain and generally feeling unwell. I just put up with the pain until it became so frequent I was having more bad days than good.

I finally went back to the doctors as felt like I had something to show them. Was told it was probably HSP again and we'd probably had come to the end of the road. I asked for the billionth time if it could be Lupus related. My sister has Lupus and my mum is under the Lupus clinic at Guys & St Thomas' and the doctor trawled back through my notes (I never get to see the same doctor at my surgery). After I saw the rheumatologist back in 2012 he had requested an ANA test & a follow up but this was never done! I was then told to book a blood test.

I had bloods done & was told to ring a week later, I went back to the doctors for the results but was told they hadn't done the ANA. I then had to rebook bloods for the following week & im now waiting for results which could take up to a month.

I feel in limbo. I'm dreading a positive result but equally dreading a negative one as this will again leave me with no answers. Did anyone else feel this way?

[whisperit]

Hello MariaK71

It's a rough deal to have had such a lot of horrible symptoms for such a long time and no clear treatment plan.

As you have probably seen from many posts on this forum, it is absolutely typical that many of us struggle for a long time without a definite diagnosis, and with changing diagnoses, and with strangely contradictory test results and medical opinions. I have spent the last year in limbo regarding some very debilitating symptoms, with none of the specialists I have seen able to figure out what is going on. Currently, I favour the idea that no two people with auto-immune disease are the same - we each have our own individual version. The main thing, of course, is to get an effective treatment.

I hope your blood results are helpful whatever they show. Meantime, hang on in there, and keep in touch! x

[MariaK71 in reply to whisperit]

Thank you so much for your reply. It's been a real eye opener reading through all the posts and seeing what everyone else has been through.

I think the biggest worry is not finding out what causes all these things and just being written off by my medical practice. Even with visible issues they were very dismissive and I'm dreading going back. I just feel at the moment it's a lose, lose situation. Being diagnosed with Lupus or any other auto immune disease would be terrible and not being diagnosed leaves me without any support, treatment or answers.

Having a particularly down day today and it's taken most of the day just to be able to get up so it's nice to know that others care and understand. Thank you x

[whisperit in reply to MariaK71]

Well, m experience has been that so long as I have had a credible story, the medics have been willing to continue ordering tests and making onward referrals. I now feel that, although some of my most debilitating symptoms remain unexplained, some more sinister possibilities have been ruled out and I can experiment a bit with my own ideas.

However, that does depend on the fact that not only do I have some clear clinical indicators (like high ANA, positive anti-Rho and visible symptoms such as muscle fasciculations) but I have enough medical knowledge to ask some very pointed questions and make suggestions about tests etc.

Without both of these things, it would have been much harder to make what progress I have.

This forum has helped me too. So has shouting, "The struggle continues! Victory is certain!" at regular intervals x