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Undiagnosed, trying to navigate the healthcare system.

I've been trying to get answers about what the hell is wrong with me for so long I am starting to lose hope. Growing up my parents thought I was just a hypochondriac. Then when I was able to start going to doctors visits on my own and was diagnosed with #PCOS at the age of 15/16 I finally had proof that some if my symptoms were real.

I was finally diagnosed with #mitral vavle prolapse at the age of 26. Turns out that I've had it my entire life but no one cought it until just recently. In addition to the mitral valve prolapse I was also diagnosed with #CongestiveHeartFailure #rectocele #vaginismus #lymphadenopathy #BipolarDisorder #Hypertension #Sleep apnea and #PelvicFloorDysfunction .

I also fit the criteria for a lot of other conditions but I'm having a hard time getting clear answers from my doctors as to wether I do or do not have these other conditions.

Does anyone else find it difficult to actually get a diagnosis from their doctors? Even when you meet all of the criteria for such diagnosis?

My current issue is that I'm trying to get in to see a geneticists to get tested for #EhlersDanlosSyndrome and other connective tissue disorders. In order to do so you have to provide a lot of documentation showing why you should be tested for genetic conditions. Part of this documentation would include the conditions that you've been diagnosed with. But since I have not gotten an official diagnosis for many of the conditions I suffer from I don't have a way to include them in the documentation to send to the geneticist and I have been denied an appointment twice now.

It's like a puzzle. I need my doctors to help identify the missing pieces so that I can go to the geneticist and have them complete the puzzle but I am so tired of having to push and push and push to try and find doctors that are willing to run the tests and not just give up before the missing process are identified.

Why is the process so difficult? On top of it all I have suffered from #Undiagnosed #ChronicFatigue for the past 8 years and I just don't have the energy to continue fighting. But if I don't continue fighting then I'm only going to continue to decline. It's a never ending loop.


Still #Undiagnosed

Big hugs to those out there facing this, whether you are just at the start of your journey or years in like myself, with still nothing but a load of “all clear”s from many different departments, both NHS and private.
I’ve fought this for what, four years now; doctors sigh when I recount my symptoms, my fiancé rolls his eyes when I tell him about my pain. My family was always too self absorbed to pitch in, they and my friends hastily dropping away as they realised that I couldn’t do things for them anymore, fit into their schedules as readily, or maintain a permanent positive outlook in the face of everything. Eyeing me sideways as I shift in pain or decline an activity far beyond my reach, some even outright claiming me to be a fraud behind my back.
It’s not all intangible though, and this is the kicker - for all the invisible aches and pains, the lack of energy that is so hard to convey, the huge gulf that lies where my support network should be, there are actual physical signs, red flags that I feel have been completely ignored; night sweats, recurring fevers, lymph nodes increasing in size, density and number all over my body, an unknown, slow-growing lesion in my spinal cord and now a bone in my shoulder growing abnormally, first raised to my GP in late February. Still no diagnosis.
All other symptoms aside (but should surely now be fully included?), with this enlarged bone, should I not have been put on a cancer pathway by now?
There have been so many delays - GP told me to wait for the initial X-ray appt (which never came) then was told when I checked 2wks later I should’ve rang the hospital to book it. After finally getting the X-ray and chasing the report a week or two later, it turns out the doc only asked them to look for a “floating rib” rather than the bone enlargement, so it came back clear. Another week of them looking at it again confirmed “deformity” and further imaging was requested. After another 2 weeks of nothing I contact them to find that it had been rejected as not marked urgent. Doc marks it urgent, I phone to book only to find they’ve marked me down for the wrong shoulder and they need to confirm the right one before imaging. A total of five weeks plus delay on top of several years shouldn’t mean much at this point, but now I’m actually really very scared. This new thing hurts in a different way to everything else (it really kicks in heavily at night and I have to use oramorph on top of usual pain meds to try to beat it back!) and this weird bone seems to be getting more and more prominent. My arm keeps going tingly and weak and rubbery lumps are appearing around my collar bone and neck. They aren’t listening, refuse to acknowledge the lumps and keep messing up - I really don’t know how to get them to take this seriously.
I’m just so worried that it’s going to be too far gone by the time they catch it 😕

#ChronicPain #lymphadenopathy #bonepain #Deformity #ChronicIllness #alone #Undiagnosed #doctorsdontlisten #ScaredItsC