Any thoughts?

Posted by hopefulhealing @hopefulhealing, Oct 4, 2021

I am looking for any ideas as to what I should do next as a step for healing. I have been dealing with health problems since I was a child. Every few years, another problem presents itself and I am still left with no official diagnosis.
-Missing adult teeth (possible genetic issues?)
-missing a rib on each side (possible genetic issues?)
-Heavy child even though I played sports and ate healthy
-severe constipation as a young child then started with extreme stomach pain and diarrhea around 8 years old and was diagnosed with IBS
-Terrible painful acne into my 20's
-Tonsillectomy at 17 (I was getting sick constantly)
-High Blood Pressure diagnosed at 18 (Lasts for months and then seems to resolve itself for a while, then back on meds again)
-Reoccurring sinus infections
-Bloating
-painful periods/intercourse and frequent painful urination (had exploratory surgery and was diagnosed with endometriosis and Interstitial Cystitis)
-extreme fatigue
-low energy
-always cold
-numbness in hands and feet
-insomnia
-diagnosed with dysautonomia
-Infertility issues with no diagnoses 
-miscarriages
-fertility doctor sent me to an endocrinologist to get some answers (weight was creeping up fast, blood pressure issues were back)-stains in bra where nipples are-dull pain under breasts-no sex drive
-joint pain (especially hips and ankles)-hair loss
-blurry vision
-headaches
-facial and muscle twitching-Significant weight gain in a short period of time and unable to lose it-had a blood test done to check for food sensitivities and followed plan of nutritionist. no changes except for stomach feeling a little better 
-told I was insulin resistant
-was put on metformin- made me go to the bathroom more than I already do (no change)
-was put on trulicity shot, made me extremely nauseous (no change)
-was put on a low dose thyroid medication even though labs were in normal range just in case
-began having hypoglycemic episodes mainly at night and while sleeping. Carbs and sugar make it worse. 
-small flesh colored bumps on ankles and side of knees-current endocrinologist ordered an abdominal MRI to check for insulinoma. nothing showed, waiting to see about an endoscopic ultrasound 
I NEED to feel better and I am welcome to any thoughts or ideas, please and thank you!  

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@becsbuddy

@hopefulhealing I’m sorry that things aren’t working out yet. Just be persistent in your search. Did you look for a regional medical? Any luck? Try to see a rheumatologist with cross-training in autoimmune diseases.
Also, pare your list of symptoms down to those bothering you the most and try grouping them together. Do most of them fit into a category, like heart or skin or reproductive? This will make it easier for the doctor
All of this can take awhile, but it is worth it in the end
Keep me posted!

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Thanks @becsbuddy and @change25 ! I actually reached out to Mayo and I have the clinic questionnaire that I now need to fill out. I never thought I would need to consider traveling somewhere to get help, but I can't wait anymore. I hope they will be willing to help (fingers and toes crossed).

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@hopefulhealing I am so glad to hear this! Wow! But please remember, that Mayo doesn’t/can’t take everyone. Sad, but true. Here is a link to hospitals that are in the Mayo care network. https://mayoclinic.org/about-mayo-clinic/care-network/members
I’ll keep my fingers and toes crossed!

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@becsbuddy

@hopefulhealing I am so glad to hear this! Wow! But please remember, that Mayo doesn’t/can’t take everyone. Sad, but true. Here is a link to hospitals that are in the Mayo care network. https://mayoclinic.org/about-mayo-clinic/care-network/members
I’ll keep my fingers and toes crossed!

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Whelp they did not take me. I literally don't know what else to do 🙁

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@hopefulhealing

Whelp they did not take me. I literally don't know what else to do 🙁

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Oh, oh, @hopefulhealing. I’m so disappointed for you, but ,please, don’t give up hope. Have you checked the clinics in the Mayo Care network?
https://mayoclinic.org/about-mayo-clinic/care-networks/members
And large regional hospitals? I know you’ll find help, it’s just taking time. Will you stay in touch with me?

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@hopefulhealing

Whelp they did not take me. I literally don't know what else to do 🙁

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Good morning @hopefulhealing. I found these 2 things which might be helpful:

http://Www.rheumatology.org. This organization has a “find a rheumatologist”

https://health.usnews.com/best-hospitals/rankings/rheumatology. This also might be worth a try.

Let me know what you learn so we can pass it on!

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@becsbuddy thank you for continually checking in. I am seeing my endo next week and plan to get the information Hopkins needs to visit a rheumatologist there. We will see what happens...
Thanks again!

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