How do I successfully get an appointment?

Posted by bomo @bomo, Nov 28, 2022

I have Sjogren’s disease, have managed Type 1 diabetes for 47 years, and have had Graves’ disease and Graves’ ophthalmopathy. I was recently diagnosed with breast cancer (surgery in 2 weeks) and am having another biopsy on my neck. However, none of that even comes close to the anguish of two years of gastrointestinal distress that includes random vomiting and constant diarrhea (10 episodes before noon today) despite high dose anti-diarrheals. I have nearly passed out many times over the past month and my blood pressure was 88/56 at the radiologist. (And I haven’t even started radiation.) I have lost 19-20 pounds from my normal healthy weight. I also have nerve pain, intermittent numbness in extremities (not diabetes related) and my voice is impaired. As you might imagine, keeping up with my job running a business is challenging to say the least. When I got rejected by Mayo today, I was really deflated and not sure what to do next. Can someone please tell me how to successfully get an appointment?

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@phoenix29412

This would be a shot in the dark, a needle in a haystack.... but maybe worth a try?
NIH National Institutes of Health
There are at least 6 different clinic sites in the US.
https://www.nih.gov/news-events/undiagnosed-diseases-network-launches-online-application-portal
Good luck!

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I will look into these places.

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Thanks for your ideas. Unfortunately I can’t take Pepto Bismol because it is also an anti diarrheal and I have constipation!

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@ilean

Thanks for your ideas. Unfortunately I can’t take Pepto Bismol because it is also an anti diarrheal and I have constipation!

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Call Mayo and say you want to make an appointment with Dr. X in Endocrinology. They will transfer you to that department, and hopefully, you'll get an appointment. Also, Mayo GI prescribed Swiss Kriss for help with constipation. You can order on Amazon; it's Senakot with herbs. 2 at dinner every night for me, and sometimes I take 2 with breakfast, if I need.

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I have several medical issues but was turned down by Mayo too. I even went there anyway thinking I could get in somehow. My rheumatologist referred me but after looking at my medical records they said I have too many things wrong and need to be seen in Internal Medecine. They have no openings so I was done. Not having anywhere else to turn I got creative. I joined a research study at Mayo and was finally able to get in to the Gastroenterology department. They found out I did not have a condition that my local GI doc said I had but instead have SIBO. They felt my Sjogrens was causing me to have dismotility of the small intestine and so they treated it with antibiotics. It helped but came right back. My local GI doc treats me with an antibiotic for 10 days every month and for the 1st time in years and years I'm not having diarrhea every day. Mayo diagnosed me but my local doc had a better treatment. He said it may be a life long thing. I got into another doctor there by contacting a Dr.s desk nurse. I found the number in a post. Talked to her and she got me in. Get creative and think about other ways to get in. I was even a patient there 40 years ago and they still would not take me. Good luck and if you still can't get in check out US World News to see where else they have good GI departments. I've been where you are and it is a horrible thing to have chronic diarrhea and no life. All prayers are with you.

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@ilean

Thanks for your input!!

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Now, about 8 months later, I have found something else that is amazingly helpful, chewable apple cider gummies. The brand that works for me is cnpusa.com. (No, I have no ownership in the company no do I know anyone who owns or works there.) I have tried one other (cheaper) brand and it did not work. These gummies are like a cure-all for diarrhea, heartburn, nausea and constipation (yes, I know that makes no logical sense). My husband was having stomach issues (for years) and he tried them - helped him too. My sister has had IBS, a bacterial overgrowth and other terrible GI issues -- helped her too. Definitely worth a try!

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@bomo

After more than 70 medical appointments and tests since 2020, I am completely baffled as to why Mayo won't take me. It is hard to articulate how frustrated I am and how alone I feel.

My highest priority is diagnosing why I've had constant diarrhea and occasional vomiting for more than 2 years, and how that might relate to unexplained nerve pain, numbness in extremities, nearly blacking out over and over. I have a plan of action for the breast cancer and am completely satisfied with my doctors and my surgeon, I do, however, think it will be tough getting through surgery and radiation with the violent GI issues I have, so diagnosing that issue seems like the priority to me.

Are any of the options you have recommended focused on diagnosis?

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For the diarrhea try maxing your vitamin intake. b, c, d ,k and 2 chewable multivitamins (kids). Also magnesium, salt and prescription strength potassium which eliminated my diarrhea. Good luck

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I am attempting to become a patient at Mayo Clinic in Phoenix. I received a phone call this morning which was unfortunately interrupted. Will they try to contact me again? Or what do I have to do? Has this happened to someone before? I have some affliction which, so far, no doctor has been able to diagnose. I really need to become a patient.
Please help!
Ray Wiltgen

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@ilean

Thanks for your ideas. Unfortunately I can’t take Pepto Bismol because it is also an anti diarrheal and I have constipation!

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I have had similar experience with a month or so of constipation and stomach cramps. My Dr indulged my inquiry for a CT. However, he also recommended Magnesium Oxide (2 at breakfast and 2 at bedtime). It is helping. I have had a CT and will be getting an MRI next week. The CT required two bottles of barium, not too bad. But, I didn't realize that it makes one sleep the next couple of days! For the MRI, I had to get bloodwork re: kidneys as the contrast affects that. I had an allergic reaction to what they used for echocardiograms, and this abdominal (liver) MRI will use a different one. They advise 5-10 days between the two. Just thought I'd share in case you ever come up with this situation.

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@rwiltgen1

I am attempting to become a patient at Mayo Clinic in Phoenix. I received a phone call this morning which was unfortunately interrupted. Will they try to contact me again? Or what do I have to do? Has this happened to someone before? I have some affliction which, so far, no doctor has been able to diagnose. I really need to become a patient.
Please help!
Ray Wiltgen

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Hi @rwiltgen1, did you hear back from the appointment coordinator?

If not, please call appointments at Mayo Clinic Phoenix:
Phoenix/Scottsdale, Arizona
Central Appointment Office
480-301-8484
8 a.m. to 5 p.m. Mountain time
Monday through Friday

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@colleenyoung

Hi @rwiltgen1, did you hear back from the appointment coordinator?

If not, please call appointments at Mayo Clinic Phoenix:
Phoenix/Scottsdale, Arizona
Central Appointment Office
480-301-8484
8 a.m. to 5 p.m. Mountain time
Monday through Friday

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I re-applied and am scheduled to be called Monday 12/11 at 10:15.
Thank you.
Ray Wiltgen

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