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Anyone else have a crazy list of symptoms and no diagnosis?
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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Have you ever consider you might have chrons or ulcerative colitis? I have UC and have the same problems because I drink too much coffee. They infuse dangerous drug into my system with no results. It's incurabe and seeking pallative care. Maybe you could ask for colonoscopy? Maria.
@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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3 ReactionsSelf diagnosing despite or because of the medical profession. I tend to check out a doctor’s credentials: school, internship etc. I avoid those who do everything at the same school.
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1 Reaction@ailsas
That seems like good advice. Depends on where you live, if you have insurance and resources. Some folks are living in the street. Some folks cannot feed themselves or their family. Some of us have resources and insurance but suffer medical challenges. Good to remember what we do have.
I find that a bit of a non sequitur. Libraries and their computers are free. Yes there are those on the street — many in my neighbourhood. Some may not have the capacity to interpret. Most on these forums do.
@ailsas Huh?
Perhaps you have adrenal insufficiency or an autonomic disorder. Both create all these symptoms. An endocrinologist would test your cortisol levels for adrenal insufficiency and a neurologist would know about autonomic disorders or dysautonomia. I wish you luck in getting the help you need. God bless you.
@sidurham I was responding to your comment about people in the street either the implication that they cannot get information Many where I live. I see street people napping in libraries - computers are free. Resources are there Many community resources as well.
I’d try allergy testing… idk… there are tests you can order online… nowadays… long time ago I had similar things happening in my 20’s and it was a long journey… if you can go into a urgent care clinic, and request a cbc and like what ever the ‘organs’ panel is… like how’s your inflammatory markers doing? monocyte's too (I think that’s what they’re called) not just regular inflammatory markers… liver markers like bilirubin… these tests seem to be where my doctors start from every time I’m in a visit. Idk. Colon health is easier access too nowadays with clinics and some kind of kit… the urgent care people might be able to give you suggestions as well… idk. Urinalysis info is usually helpful as well… like if you ‘think you have a UTI’ they will give you a urinalysis test (er whatever…) ph balance too is importance with the green tea… good luck friend!
No, you are not crazy and you started at the right place, your diet. I suffer from several things, Hashimoto’s with Hypothyroidism for which I take a medication for (Synthroid) and I regulate my Hashimoto’s by diet alone. I have eliminated eating gluten, dairy and soy for almost 3 years now. I also have Long Covid after contracting Covid in December of 2022. I lost my taste and smell, along with other symptoms, some of which are dissipating. I still don’t have my taste or smell, but my body tremors have become less annoying as I’ve had 7 Stellate Ganglion Block injections which really took my tremors down. Still working on regaining taste/smell, I’m having Green Violet Laser Light Therapy through my Chiropractor’s office in Geneva, Illinois. I was noticing more frequent quick whiffs of things, but his office was closed last week for the holiday and I haven’t smelled anything since my last treatment. I will continue going 3 x’s per week as I feel it was helping me. We’re all struggling with something and I wish you well on your health journey.