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Difficulty Finding Diagnosis/Treatment In The Chaos Of The Medical System

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Phenex
Phenex Community member Posts: 5 Listener
Hi.

For too many years to count, my life has been difficult due a mysterious condition which encompasses the following symptoms:

Fatigue, Weakness, Tiredness, Sleepiness, Aches, Pains, Headaches, Migraines, Nausea, Palpitations, Shortness of Breath, Sleep/Wake difficulties, Excercise Intollerance, Light Headedness, Dizziness, Splotchy/Blurry Vision, Tinnitus, Malaise, Brainfog/Cognitive difficulties, as well as their effect on my mental health.

When it comes to trying to find a diagnosis or treatment via the medical system it feels like it's been a complete circus to say the least. That's to say that it always feels as though I'm completely wasting all of the precious time and energy that I'm sacrificing to go there for nothing, or to be constantly messed around.

I only realised recently that the doctor that I am assigned to hasn't even been in practice for many years. Rather than tell me this and assign me a new one, it seems the way things work is to keep giving me a different doctor to see every time and it often feels as though things keep starting over whenever I am simply given the same simple tests that they always give me every time and then they never get back to me again. Instead I have to call them, assuming I remember to with my bad memory, in order to find out my results only to find out what I already know because it's the same test I've had over and over again. To which I ask for another appointment and then get a different doctor, which always seems to be over the phone, rather than face to face. It often feels rather rushed and I'm often then told something along one of these lines:

"Your results have come back fine so you have nothing to worry about."

"Yeah sorry. We have no idea what it could be, but at least it doesn't seem to be anything serious. "

" Perhaps it's all in your head. You should probably see a psychologist instead, just incase."

"Have you tried [Insert something I've already tried 100x here]"

" I don't know what more you want me to do?"

or

"Don't worry. We'll do what we can to figure this out" and then after one more test comes back fine, they make a complete u-turn and say one of the previously mentioned things.

Either way, it always just trails off into nothingness leaving me to feel massively let down and frustraited, and I lose hope in the system more and more each time.

Then when I do find the time, the energy and the will power to make another appointment, it's a completely different doctor yet again, who at most, just peforms the same initial tests as every other doctor did that always come back fine and the cycle seems to repeat.

To those out there who have found themselves in a similar situation. Assuming you eventually found the medical care that you needed, how did you manage to get it in the end?


Comments

  • Albus_Scope
    Albus_Scope Posts: 4,782 Scope online community team
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    Heya @fenex and welcome to the community. :)

    Often the route to a diagnosis is very convoluted and feels like it's taking forever, but the specialists need to do things by the books and rule out the more simple explanations first, sorry it's becoming so draining for you. It does feel like far too much to-ing and fro-ing, I understand that first hand. 

    I agree with Cressida, having the app open next time you see your GP could help. And sometimes I've found the younger doctors to be far more knowledgeable and willing to actually put me forward for scans etc.  They tend to still have that sparkle in their eye and really want to help.  :)
    Albus (he/him)

    Online Community Coordinator @ Scope

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    Opinions expressed are solely my own.
    Neurodivergent.
  • Phenex
    Phenex Community member Posts: 5 Listener
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    Thankyou for your words of encouragement

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