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Searching for answers
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.
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Has Metaplastic atrophic gastritis (MAG) from an autoimmune cause (AMAG) ever been brought up? Symptoms do include, nausea, unintentional weight loss and dizziness. Have you been seen by Gastroenterologist or had an Endoscopy. Have you tried omeprazole to help with symptoms?
Maybe ask question in "Digestive Health Support Group" or scroll through to see if anyone has similar issues.
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1 ReactionAre you on any medications that might be causing a reaction?
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
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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1 ReactionI have not, but that will definitely be brought up to my GP. I have not yet been seen by gastro, but have been seen by endocrinology.
Thank you so much for your response!
@lkkelly68
Definitely see a gastroenterologist for endoscopy and other testing plus an immunologist to test for allergies.
Did your endocrinologist rule out issues with your thyroid? Did you review all bloodwork results to see if there are any abnormalities?
Depending on what you learn from the gastroenterologist, you may also want to be seen by an ENT and neurologist.
@lkkelly68 what is OOP?
Ido, Praying for you right now. I'm wondering if you have Long Covid from having COVID
so many times....it can cause hair loss. I lost so much hair with COVID both times. It did come
back, but it takes time
Personally, I would try and find a COVID Recovery Clinic OR go to an Integrative Medicine
doctor who looks outside the box....this will be out of pocket, but, your insurance will pay
for the bloodwork.
Having a high RF, if you have already seen 1 Rheumatologist, I would see a 2nd one for this.
Blessings & Prayers for you to get answers and feel better. You have a lot on your plate and I am so sorry.
Sorry, that's Out of Pocket.
No. I'm only on one medication just now, and that is my antidepressant which was begun after all of this started.
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