Anyone else have a crazy list of symptoms and no diagnosis?

Posted by moonlighthouse @moonlighthouse, Aug 31, 2023

I’ve been having weird symptoms off and on for the last 5 years, starting when I was drinking way too much green tea. I think all the caffeine set something off, because weird things started happening. I started tripping on my own feet like they were just suddenly heavier. Then I started noticing muscle fatigue more, it was getting worse. I had chest pain, palpitations, and I felt like I couldn’t catch my breath. I was always too hot or too cold, either flushed or my teeth were chattering. My food was not getting digested, it started coming out looking like it did when it went in. I started noticing extreme body odor, and I usually almost never stink. It only took a couple of minutes to stink again after washing. I quit drinking caffeine but I still felt terrible. My coworkers were concerned and my employer paid for me to go to the doctor (I don’t have health insurance), but after telling him my symptoms, he just said “huh”. He said some of the symptoms sounded like thyroid, so he ordered the regular panel of blood tests plus a thyroid marker. I got a robocall saying that all of my tests came back within the normal range. But I felt like I was definitely dying, and like my doctor didn’t care. So I went to Dr. Google, because he’s free, and found the auto-immune reset diet. It was insanely hard but I started feeling better after only a week or two. After a month I started eating regular food again and I was almost completely better. Since then, I will be fine for months, then start having symptoms again and have to go on the diet. It’s terrible, but I’ve grown very fond of roasted vegetables. I was hoping someone on here had experienced something similar, because I can in no way afford to see a doctor, let alone several specialists who need to run every single test. The diet is working for me for now, but it would be really nice to know I’m not crazy.

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Mayo Clinic nor any other med facility in the south east cares. I have exact same symptoms and test results my mother had. I’ve even offered to be a test subject because all doctors swear polymyocitis is not genetic. But three generations later….they didn’t diagnose her in time and she developed irreversible and untreatable ild. She’ll be dead eight years tomorrow. But I don’t have a rash so no one will make my case a priority so let’s treat people that don’t want to take care of themselves or eat correct diets first and the heck with people that just want answers and are willing to do most amything to stay healthy. Gotta love the modern day medical profession.

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Try the paleo/aip diet. The minute you start grains (including corn) you’ll be ingesting glycophsates. Stay away from preservatives dyes and fake coloring. It’s totally a doable diet. We all get used to east foods but those processed foods (even some organic or healthy labels ) are a bunch of lies. Check out the thyroid revolution Facebook page. Well worth the time and money.

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Profile picture for bruizersmom @bruizersmom

@moonlighthouse , yes..multiple disorders, multiple symptoms. There are two of us in the Parkinson's Disease group with almost identical lists! Every time I've switched to a different group to address my varied individual illnesses here at Mayo, I find the same thing: one diagnosis, maybe 3, even 8 9 more.... and a handful of overlapping problems. I'm just more confused. You and I? Heart beat irregularities, freaky temperture so radical I have goosebumps, violent pain, discolored skin and then I'm burning up with reddened skin, all sweaty. Eating problems. GERD, temporary loss of taste, a desire to spit out my food, strange unexpected B.O., and probably there's even more. Some probs are just too weird: tonsil stones. I just tripped over someone talking about it. Never heard the term, but yup, I looked, and yup, I found one. And the list goes on! I've taken to just typing out a bunch of these on Google's search, and every time I actually get a name for the 'thing' and also an explanation of what it could be related to!
Carry on. We just all have to do our own diagnosing, I guess.

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@bruizersmom
The symptoms you have described are pointing in the direction of autoimmune conditions. Particularly, discolored and reddened skin, GERD, this could be the beginning of scleroderma or systemic sclerosis. Rheumatologist can do SCL-70, ANA, and other autoimmune and inflammatory biomarkers tests to confirm.
However, loss of taste and violent pain are not typical for scleroderma.

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