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Seeking Help for Unknown Medical Issue

Autoimmune Diseases | Last Active: Jul 23, 2022 | Replies (41)

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@ajidzior

Thank you so much! I will look into that. I appreciate the support.

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Replies to "Thank you so much! I will look into that. I appreciate the support."

Hi Amy @ajidzior, I would like to add my welcome to Connect along with Becky @becsbuddy. You mentioned being physically and mentally tired and I was wondering if your symptoms sound similar to those in this discussion -- Chronic Illnesses of Millions of Women Left Untreated: https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

I was diagnosed with fibro in 1984. Then looked for a Neuro to tell me that I knew I had ms, finally in 2000 got diagnosed after looking for 16 yrs. Had moved a bit. Tried to reach out to him found out he had died of cancer, so sad. He was world famous in adult MS & children's neuro diseases. I never knew. I have sjogrens, had a lip biopsy. Lost almost all my teeth, it is my primary disease as it can rupture your organs, most don't know that! I have 4 rare diseases. I have never been depressed. I feel most have worse problems then me. Also extreme bad back issues, see a DO Dr who does gentle OMT's that relaxes the mucsles, feels like a massage after 20 mins. Insurance pays.

@ajidzior Amy, a couple things. Looks as if you are keeping good records and diaries, so keep it up. Second, sign in to OMIM.org (Online Mendelian.....) Enter by your worst issues, and track their reports. This will not pin down the cause(s), but should give you some ideas. Then do the same with HPO.org, (Human Phenotype.....) Then go to one of the better genetics labs, such as Sequencing.com, Nebula Genetics, GeneDX, etc. and get their report, either of an assay (1% of the whole genome) or a whole genome. Sequencing.com or Ambry Genetics may be the least expensive at the moment. Then, if you can, ask your family for any odd diseases or symptoms such as diabetes, Crohn, Myeloma (most likely), etc. Get a genetics counselor to help you sort it out. There are many Myeloma types which present themselves with the symptoms and signs you name, such as fatigue, tooth pain, eye pain, cardiomyopathy, slow-developing cancers of internal organs, etc. Finally, don't rush too much. And if your doctor is not at least as curious as you about your situation, change doctors. oldkarl