Nine years to a diagnosis

Started 25 December 2025 · 14 replies · 114 hearts · read 1.3k times

MaritGroningen, NL · 25 December 2025

7 months ago

Nine years to a diagnosis Writing it down partly to work out what I actually think.

Some background first, because it matters for the question.

My prescriber has been fine, genuinely. The problem is that I get nine minutes twice a year and there is no version of nine minutes that covers this.

I am aware some of this may be nothing. I would still like to know whether other people have had it, because I have spent a fortnight assuming I am the only one.

The thing that has surprised me most is how much of this is about other people rather than about me.

Not looking for a plan. Just company and whatever anyone has found.

LenaMunich, DE

I keep a two-line diary and it is the only reason I could answer this question about myself. Worth starting even now.

RuaridhFort William, UK

No advice, just recognition. That sounds exhausting and I am sorry you are in it.

8me too 6

WinnieCarlisle, UK

The phrase that unlocked my appointment was asking what specifically she wanted me to watch for. It moved us from reassurance to a plan in about thirty seconds.

MiraFacilitatorRotterdam, Netherlands

the opening post said something I want to sit with for a second.

Two things, both boring. First, none of us can tell you what to take. Second, the conversation you want to have is with your prescriber, and we can help you write it down.

TheaBergen, NO

Yes to the burping. It is real, it is unbeautiful, and it does settle.

TinukeManchester, UK

the reply above said something I want to sit with for a second.

I am about four months behind you and I have been dreading exactly this, so thank you for writing it down before I got there.

MaryamBirmingham, UK

My pharmacist was more use than anyone. Ten minutes at the counter, no appointment, no charge.

BrennaEnniskillen, NI

Can I gently push back on one thing? Not the substance, just the framing — you have written twice that you should be coping better. Who told you that?

TildaCambridge, UK

I have been in this circle a year and this question comes round every few months. It is not a silly question. It is the question.

BeaDublin, IE

#10

the reply above said something I want to sit with for a second.

Similar here, and mine turned out to be a completely unrelated deficiency picked up on bloods.

DillyNewport, UK

#11

the reply above — yes, and the bit that took me longest to accept was the next part.

Different experience here, for balance. Mine did not improve and in the end I stopped, and that was the right call for me. Both outcomes exist.

GittaBonn, DE

#12

It got worse before it got better for me, which I wish someone had said. About ten days of worse.

MiraFacilitatorRotterdam, Netherlands

#13

I want to slow this down a little. There are four different answers flying about and they are all somebody's real experience, which makes them true and not necessarily relevant to the person who asked.

10me too 5

BodilÅlesund, NO

#14

What the reply above described happened to me too, in a slightly different order.

I would take that to a clinician rather than to us, and I would do it this week. Not because it is definitely serious — because it is the sort of thing that is much easier to rule out than to worry about.