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> you have no idea how it feels like to know you have something wrong, but receiving nothing but shrugs from the experts

I remember telling this to my dad 8 years ago and he still thought of me as just being weak or a hypochondriac. "It's all in your head son!" he would say.

2 years ago he started losing function of his left leg. A very snarky "It's all in your head dad!" was my first response when he started complaining. That was the beginning of his journey into understanding what I've been going through all these years. Today his left leg no longer works and he is also losing function of his right leg. He has abnormalities on his MRIs and EMG/Nerve conduction tests. Even with this, doctors have not been able to diagnose him with anything and all he gets is shrugs. He's extremely frustrated with the US health system and has decided to just give up and wither away instead.

It's nice to finally be validated by my dad, but I wish he didn't have to go through the same experience just to show a little empathy and understanding. I think most of the people in this thread will similarly have an impossible time understanding our predicaments until it affects them the same way.

I was sick for close to two years. I had excellent doctors who cared and tried their best. There were days where I was literally lying in bed because I was in so much pain. Despite that, the worse pain by far was not knowing what was wrong with me. That took it's toll more than anything. If someone said killing a puppy was the cure I would have done it in a heart beat. It's not something you can ever really understand until you live it for days, weeks, months, years...

Uuh, crap. How did you get better? Any guess what was it?

Thanks for asking. I did get better. The thing is we never got a diagnosis with 100% certainty. I had a bad sinus infection that wasn't going away. I took an antibiotic and our best guess is that I had something called a 'post-viral arthopathy' (I probably spelled that wrong!). It took about two years to work through and I did end up taking Nortriptyline because it does have an off-label use for some of these bizarre neuropathy pains. I think my body, for whatever reason, had in insane over reaction to the antibiotics and it took a couple years to heal. The medicine helped dramatically but it took a year and a half to get there. I ended up stopping the medication after 6 years just to test if it would come back and it didn't.

My son nearly died, and my persistence was the only thing that saved him. I kept insisting on more blood tests, despite being told he was just dehydrated or going through typical teenage malaise, and that it would pass. Eventually, a blood test revealed something was seriously wrong, and we rushed him to the ER. The doctor told me that if we had waited another two or three days, my son likely wouldn’t have survived.

Now, I spend my evenings trying to learn as much as I can about basic medicine and delving into endocrinology. I don’t blame the doctors themselves—they’re overworked. But I do blame the system that pushes people toward becoming YouTubers instead of doctors.

I was also diagnosed recently with ankylosing spondylitis after years of pain in my back (I am 37).

For years I thought it was due to a lack of exercise but after spending a year doing yoga, Pilates and physiotherapy things only worsened to the point where I could barely walk and could not bend down at all.

I had to strongly insist to my GP that this was not normal. After a referral to an orthopedic surgeon he ordered an MRI. The results indicated possible AS so he referred me to a rheumatologist. Tested positive for HLA-B27. Another MRI and an X-Ray and the diagnosis was confirmed.

AI was very useful in explaining the test results and doctors letters in plain English.

I have an autoimmune disorder and so does my wife (getting her diagnosis, the same as yours incidentally, took years). Don't tell me I have no idea how it feels just because I don't agree with you.

What a coincidence! At the end of last year, I had uveitis for the second time, and my eye doctor advised me to investigate whether I have an autoimmune disorder. Two weeks ago, I underwent a blood test, but all my values came back normal. It was only after researching the HLA-B27 antigen online and discussing it with my doctor that I was able to persuade him to test me for it. Initially, he was reluctant, as he saw no reason to do so. Now, I have another blood test scheduled in three months, where I will finally find out if I have it.

Ive basically given up on US medicine

My journey was done in two very different countries: US and Brazil. The exact same treatment approach and behavior from doctors.

I have had a similar experience. But in my case all specialists said it was IBS and "just don't get stressed". I had hundreds of tests by dozen doctors in 3 countries: Mexico, UK and Germany. At the end I found out the root of my problem by mere chance with a neurologist in Mexico.

So I welcome the use of LLMs and other technology for this! Doctors are just humans, in every country.

This is the way. If we all did that, our health care system would be the best the world has ever seen. We mostly do the opposite. We give up on our own agency in terms of our health outcomes, then get on ozympic and demand cheap insulin to go with the cheap soda pop and fast food we love so much.

I read so many similar stories and I'm still shocked.

It took 8 months from my first acute back pain problems to the diagnostic.

It's interesting that you've got the same disease as OP from what I gathered.