Weirdo Health Problems

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Oh man - I took sick as a dog in January and am only now starting to get better. Been to the family doctor and specialists and tests, tests and more tests.

They found my heartbeat (ECG) has changed but they don't think I have heart disease but they are testing me for that. My blood platetlet count is high but they can't figure out why. They found cysts on my kidneys - they don't think it's cancer but they're testing that too. I tested positive for Lupus but don't have any Lupus symptoms so they're sending me to a rheumatologist as well. And on it goes.

I have had episodes of weird health issues a few times in my life that stump doctors and then often magically go away a while later. None of them can be expalined by "mental health" issues as the medical tests usually pretty much rule that out (how could anxiety make you test positive for Lupus?)

This time around is the worst - and yes my anxiety is pretty dialled up. Not happy about having to see a cardiologist needless to say.

Anyone else ever had these weirdo health issues that stump the 'medical community' ? I'm starting to think our bodies are somewhat different than neurotypicals but the docs just say no when I suggest some of this could be related to my being autistic.

I used to get recurring sinus infections and coldsore outbreaks several times per year, and my sinuses would never seem to pipe down/heal on their own even after 3 courses of increasingly stout antiotics. but when I went on a low-acidic diet, all those problems just seemed to fade away.

Yes. For the past 10 months or so, actually. I've been tested for a number of things, autoimmune disorders mainly, but the blood work, lumbar punctures, MRI's, etc, I've had done have all been clean.

It got to the point that I started to question if it was all in my head and even started seeing a therapist. He didn't think I seemed like a hypochodriac, though, and recommended I get a consult at a good teaching hospital. So, I have no idea at this point.



It's possible, but there are a lot of typical people out there who have unusual health problems or difficulty getting an accurate diagnosis, too.

I think a big part of the problem, at least in the US, is the lack of communication between healthcare professionals that means each specialist is only looking at a part of the patient's symptoms and no one is looking at the bigger picture and piecing it all together. So, if you have a complicated condition that affects multiple systems of the body, like an autoimmune disorder, for example, then you wind up with various doctors treating the individual symptoms and no one getting at the root cause.

OP, you mentioned testing positive for Lupus. Do you mean your ANA? Just wondering because a high ANA is also associated with other rhuematologic conditions. And, my understanding is that sometimes even healthy people can have higher-than-usual ANA levels. Your docs should diagnose Lupus based upon a combination of things, not just bloodwork.

I agree, some of the specialists I'm seeing are good at getting back to my GP but with others I have to brief my GP on what the specialist said. GP is trying to piece together big picture with my hematologist (they are both good doctors and work well together).

My ANA test for Lupus was negative but by dsDNA test was positive. My hematologist was surprised. Platelets, IgA, ESR and CrP high as well. My celiac blood test came back negative but they're wondering if I might be celiac (guess the blood test is hit and miss).

They have booked me to see both a rhematologist and a GI specialist but it'll be a while before I get to see them. Here in Canada emergency and urgent health care is great, cost is not a worry, but it can be a loooong time to get to see certain specialists for any chronic issues.

I know this feeling. I describe it like Cave Johnson in Portal 2 saying that We're throwing Science at the wall to see what sticks.

Why do I have my health problems and can we figure out why so we can do something about it? No one knows, but lets do some tests, and they're inconclusive, which doesn't rule out anything, but doesn't confirm anything.

Yay.... I guess, I'm not dead yet... so Yay.

It can be a long time in the US to see a specialist, too, depending upon who you need to see and where you live, plus you can go into bankruptcy just for getting sick. I'm hoping to get into the Sjogren's clinic at Johns Hopkins in Baltimore, but I will need to see several docs to get a referral first, then get all my medical records together to send down to Hopkins, wait a few weeks for them to review them and decide if they will accept me as a patient, then, if they will accept me, wait 3-4 months for a consult. If I can get in, all the testing will mean I will meet my insurance deductible, which is going to be $1,500, plus of course the insurance premiums, copays, etc throughout the rest of the year. It's a joke.

Wow that sounds complicated. And a bit scary.

I'm fortunate in that where I live (Ottawa, Canada) we have a very good university research hospital which tends to attract some top drawer talent. The medical community is quite strong in the Ottawa area as a result and odds are I won't have to go outside of my city for the care I need.

I think the toughest thing for me is the uncertainty - just have not been feeling great for five months but they can't tell me what's wrong. They have come up with a quite extensive list of what isn't wrong with me however.

Medicine appears to truly be the least exact of the sciences.

Yeah, it is. I should say that this isn't necessarily typical, though. I'm just trying to be evaluated for something that is not very well-known and need to go somewhere I can find experts. I'm tired of spending tons of money on unneccessary testing ordered by doctors in my rural local area who don't seem to know what they are doing.



Me, too. It can be really hard to be stuck in limbo, especially when that means you aren't receiving any treatment in the meantime. Hang in there.