Searching for answers

Posted by lkkelly68 @lkkelly68, Aug 19 8:24am

About 10 months ago, I began experiencing several unusual symptoms, that to date, we have found no causes. Random waves of nausea with dry heaves, random waves of dizziness, unintentional weight loss, itching on my hands, and the taste of various foods being totally like garbage. Through many tests, we've been able to rule out brain tumor, alpha gal, Grave's disease. I've had head and neck CT, MRI w/wo contrast, multiple x rays, blood work (so many vials taken!), and consults with specialists of many different types. So far, nothing. They all agree it's not psychosomatic, but nothing is coming up. My GP feels it's most likely autoimmune, but there are so many, how does one even begin figuring this out?
I came across this site, once more in my foray of looking for possible causes. I'm hoping maybe my symptoms will be recognized by someone else who may be able to shed light or suggest possible causes that I may then follow up with my team. At this point, I feel my GP is at a loss. And frankly, even with a good medical insurance plan, the OOP costs of the testing is getting beyond my reach.
Thank you in advance for reading my post, and hopefully someone somewhere may know what exactly were dealing with.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Profile picture for kobe2026 @kobe2026

I suggest you apply for Medicaid , also plus SSI disability (keep in mind for 50% of the people they are declined on first try), there's also LIS (Low Income Subsidy ).

Another source is http://www.lls.org for Leukemia & Lymphoma Society (LLS), great on medical info & financial info.
Utilize organizations as per disease

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Thank you for the information.

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Profile picture for ldo @ldo

How do you get answers! I’m so depressed and frustrated. Diagnosed with IBS, Depression and anxiety, migraines, trochleitis , and trigeminal neuropathy. But I have a high RF, hair loss, so far in ‘25 had Covid 5 times, exhaustion, pneumonia, and have seen many specialist, had many tests, many vials, many stool samples, needles and fingers in uncomfortable places. I’m on a number of meds for all of these diagnoses, but they don’t really hep. I don’t think anyone is looking at me as a whole person and I do think this is autoimmune. I’ll bet you’ve gone through this. Can you help me, please?

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I am so sorry you're going through this. I definitely do understand how you're feeling. Some days I'm still constantly on reputable websites doing research, trying to think outside the box. Other days, I'm like screw it, don't know what's wrong with me, done trying, when I keel over, oh well. And medical gaslighting does happen, on the norm, so there's always that fear.
Just hang in there!

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