would you consider stopping medical consultations if the prospect of another appointment was driving you nutty?

[postal]

I have a thing that consultants are trying to understand/diagnosis. I ave no symptoms. I have been told that the theory they are working to is that it is historical but it might be progressive and they need to monitor it and I already have a test booked for next september.

Only I'm being passed from one specialist to another within the same field for consultation, and each one seems to come up with new hypothesis that leads to more consultants being involved, and more tests but no solutions or treatment options (asymptomatic so why treat?).

And I manage to avoid thinking about it until about 2 weeks before I have an appointment coming up, but in that time I get anxious, insomniac, snappy and easily upset and filled with what-ifs and maybe thats

The current hypothesis is that it's nothing to worry about but I supose there is a potential life-threatening or life-altering possible diagnosis but I don't want to keep going because it is not helpful.

I want to just run away from it. Would it be unreasonable to do that?

YANBU, it could well be doing your head in more than it is worth.

Eg, when I had DC2 I told the pregnancy scan people: I only want to know if there are 2 or more soft markers (for problems). I had my fill of extra unnecessary scans with DC1, and I knew that I just didn't need to know that badly with DC2;
sometimes ignorance IS bliss.

so I should refuse to go to any more appointments and that would not be unreasonable or stupid?

I think YANBU, but I may have a skewed opinion. I would rather avoid medical treatments as I found it has such a bad effect on my mental health. I suspect someone more sensible would say that you should continue but have counselling to help you deal with it.

I suppose I'd rather risk my physical health than my mental health.

I wouldn't refuse, but explain your feelings and that it's bothering you that you have to keep going and seeing yet more people. Perhaps ask if you can have a break from all the appointments unless you have any further problems.

I had a riding accident and hurt my shoulder, it took 2 years to get a proper diagnosis and 2 operations to get it sorted (and it still is only about 60% fixed). I was passed from pillar to post, nobody believed me that it was anything more than a sprain until I paid a bloody fortune for an MRI and proved them all wrong. It was a nightmare, and really stressy, and I began to think I was not only a hypochondriac but had that Munchausen's thing as well. I kept at it, until I was proved right. You know your own limits, and if it's bothering you that much, and you don't feel that you're likely to be worse off for not being inspected at every turn then leave it. I bet you feel a bit like a medical experiment! Are they using you for research?!

The thing is I've never had problems and if it is historical and benign I don't expect any - although if it is progressive I suppose it could have a quite sudden catastrophic effect.

Oh shit I don't know, it's just too difficult to have it all as something to worry about for a few weeks every couple of months. I far prefer it being nothing and not being something I have to think about right now.

Would you do anything different with your life if you KNEW for certain that it was likely to suddenly progress, vs. knowing for certain that it wasn't likely to progress?

If the answer is "Nothing" or "I don't know" or "I'd like to act in future as if I knew it will happen", then what would be the value in having actual certainty?

Life is full of uncertainties that people decide to live with. A lot of people who know that they very well might carry genes for this or that dreadful condition choose not to ever be tested because knowing won't help them to LIVE in the meantime. It is entirely reasonable to be ignorant, sometimes.

I think sometimes specialists get so caught up in having something interesting to look at, and poke and prod and send for every test they can think of, that they forget you are actually a person with a life to get on with!

Is there a chief person in charge of your case? If so, could you ask them to explain, clearly and simply, what they are hoping to achieve with all this testing?

If they are just finding it interesting, but what they might find out will make damn-all difference to you personally, then you should seriously consider just calling a halt to it.

If their testing isn't going to lead to an effective treatment, and you're not going to change your life either way with a definite diagnosis, then there doesn't seem to be much in it for you.

The thing is if you didnt go then every twinge you experience from now your subconscious will be thinking it's somthing to do with this. If you keep strong and go to the appointments even if they drag on a bit they will either tell you there's nothing wrong thus end of worry or they will tell you something is amiss and then you can get the treatment you need swiftly.

I have a chronic auto immune disease which came on whilst pregnant and that I will now have for ever. There is no cure at present, only treatment.

I know that if it gets really bad, then I could die, but I ignore it for the most part; I know when it is getting worse and I need to have bloods to see what is going on, and I know that if I do too much I am exhausted for ages.

In your case I would want a diagnosis (in mine it's useful because it affects medication and medical treatment), but unless as AMIS says above they're going to cure it, then go for the appointments, but get on with your life and don't think about it.

YANBU to feel like this, I had to go through rounds and rounds of consultations to get my diagnosis and its grim and often feels unnecessary when the illness isn't taking over your life (I have an auto immune disease and tend to have good patches and bad patches). I've just had some investigations today into the illness and am in a lot of pain now, sometimes doesn't seem worth it!

but.... have you tried talking to any support organisation / helpline. for my illness there is a useful support helpline and the lady there was really good to talk to, it helped me feel at least like other people knew how frustrating the process of getting diagnosed was. don't know if there's any similar organisation for you, who might help you get your head round what your going through and weigh up the pros and cons of continuing all the consultations?

I feel your frustration. My medical situation is different, but I still had my fair share of trips to different doctors, being told different things, and I know how annoying, scary and emotional it can be.

But it is worth sticking with it, as difficult and frustrating as it is. Once you find a good doctor, it really makes so much difference.

Do you have symptons then?