Hoops and Hurdles Towards Any Diagnosis and Treatment - Don't Let Them Stop You!

[Jennifer]

Everyone winds up having to jump through hoops to get a diagnosis or proper treatment, especially those who have to deal with insurance companies. If you want an MRI sometimes you have to do other tests like an x-ray before you can get that MRI. Doesn't make sense to us because then the insurance company is spending a lot more money which is what the insurance company is trying to avoid. But don't let this stop you. If you need that MRI, go get that x-ray if you have to. Its all part of the process of getting a proper diagnosis.

We all have multiple hurdles as well. For example I recently started seeing a Neurologist for numbness in my back. He did a few MRIs (had to have x-rays first cause insurance said so) and said they'd call to make an appointment once they got the results. I never got a call. I even forgot my doctor's name since so many months had passed and I only met him once. I tried making an appointment with him yesterday and guess what? He's retired! I didn't get a phone call saying to find another one because mine has left. Granted this is annoying but I could have stayed on top of things a little better. Now I need another referral to see another one.

Here's a list of my hoops and hurdles:

- Insurance doesn't wanna pay for a test, medication, or a doctor
- Doctor retired
- Doctor left the practice (just up and quit, its happened 2x)
- Doctor office didn't get test results
- Pharmacy hasn't gotten fax for meds
- Have to have 3 or more tests done before I can do one test
- Insurance denies a test because they think I don't need it (couldn't get a pill cam because I was already have a diagnosis)
- Prescribed new med but makes me sick now have to try a new med
- Have to wait on insurance authorization for test, medication or doctor
- Need a referral to another specialist for another health issue
- There's no specialists in my area that will accept my insurance (have to branch out and drive further)
- Doctor's office has moved and didn't tell you so now you've missed your appointment and have to reschedule
- Specialist referral can take 3 weeks or more
- By the time I can see the doctor, my symptoms are much less or gone which results in no answers
- Doctor tries to tell you that you have IBS yet another med for Crohn's clears up all those symptoms you had...
- Doctor tells you you don't need something (I wanted my tonsils removed due to recurring infections) when another doctor says you clearly do
- Your doctor is rude or stupid so you start seeing a different doctor and then another until you find one that works for you, meanwhile the staff is upset cause they're tired of moving your chart around. "You can only see one doctor." I'll see whoever I want thank you very much.
- The staff lost your chart (how did you do that? We're in the same building)
- Doctor isn't free until 2 months from now... (that's for a GP a GI could be 3+ months)


This list is all stuff that's happened in the past year. I've already been diagnosed but that doesn't mean we're immune to other health problems. We need to stand up for ourselves and stay of top of things before it gets too out of hand. Don't let all this crap stop you from getting the treatment you NEED. Don't learn to live with crappy symptoms if you don't have to. There often is a way to start feeling better. Just gotta find the right doctor to get the job done. Have friends and families and spouses help you if you need help. They can pick up prescriptions and I've even made doctor appointments for my husband before we were married. Its a lot of work and takes forever to get anything done but its worth it in the end.

Having any type of life long illness is a never ending battle in more ways than one. Even trying to get insurance is a HUGE battle in the US. Try to get Medicaid. If you don't qualify right away then try for SSI and/or SSDI through Social Security. If you're denied then keep appealing and get a lawyer. Free health care is worth the hassle (you will qualify for Medicaid if you're considered disabled).

Never give up! We're here to support you along the way. :biggrin:

 

[tots]

Even three Drs in my group cant decide whats wrong with me.

Both times I have been Dx by the Radiologist who was able to show them the stricture in
my illium and then pointed out that the apthus ulcers were also a pretty good sign.

Its exhausting!

Like you said- fight for your medical care- make them explain their answers until you understand what they are telling you. Never just be a "yes man" in regaurds to your health.

Lauren

 

[UnXmas]

Thank you for this post.

It doesn't seem to be any easier to get diagnosed in the UK even though we have free healthcare. I'm very greatful that it's free, but it doesn't stop other barriers to diagnosis.

Sometimes doctors are reluctant to waste resources because they're on tight budgets. They don't want to do tests unless absolutely necessary.

Simple misdiagnosis was a problem for me. Having multiple conditions simultaneously, some rare, some atypical in presentation, meant it was confusing. Lack of objective signs on test results made doctors reluctant to take me seriously too. Or at least that's what I thought at first. But when my tests results began to come back positive for various things I still experienced problems being taken seriously, so who knows.

A strong tendency for doctors to see physical symptoms as trivial/stress related/psychological was by far the biggest barrier to getting diagnosed for me. The IBS diagnosis was given to me as if it was a fact based on no tests whatsoever. I had a history of abuse which clouded doctors' assessment of me - they didn't seem able to look past that. Weight loss got me labelled with anorexia, which then also caused them to see any symptom I reported as somehow mental (or a consequence of not eating properly).
I think it becomes a viscous cycle, too - if a mental health diagnosis is suspected and put on a medical file, then the next doctor you see is biassed by reading that, and so on. Being young, previously healthy digestive system, being a teenager and so supposedly at an emotional age when I first got sick (and possibly also being female?) may also have contributed to this view.

I have a diagnosis now. My other health problems also eventually got properly diagnosed - there's just one that is still a tentative diagnosis. The ironic thing is that I'm not sure how much I've benefited from the diagnosis. I'll get proper treatment now, and I can explain my condition to myself and others. But I still fear that I'm liable to being given mental health diagnoses that I don't actually have. That the level of inflammation they found is too minor to explain my weight loss, for example, or that my symptoms are too severe for what's expected from my conditions, and therefore could still be seen as pscyhological.

If you're frustrated waiting for a diagnosis, or it seem like you'll never get one, it may not be the as critical as you imagine. Finding a doctor who takes you seriously and tries to manage your symptoms, and coming to terms with being ill, these are things that can be done whilst going through the diagnostic process and are ultimately what will get you through whatever stage of diagnoses you are at.