Can't get an appointment: Any tips on what to do?

@radiocity My advice would be to get your most recent imaging and ask for it to be reviewed by a spine surgeon specifically for spine issues. If you get into Mayo for that, they will refer you to other departments as they see fit. I had surgery at Rochester and asked for a specific neurosurgeon there because his area of interest fit my needs. I had been turned down by several surgeons (not at Mayo) before contacting the Mayo surgeon, and he took me as a patient. It does not cost anything for a review of records as you probably already know. Because this is more specific and addresses if you would be a surgical candidate, you would be bypassing all the general requests for primary care. Do you want to consider other Mayo campuses? Initially, I didn't want to travel for spine surgery, but no local surgeon would help. Rochester is a 5 and a half hour drive for me, and worth it.

Thank you, very helpful.

I’ve not been diagnosed. Mine started 1/9/18, and about mid day, I felt like I was walking on glass, right foot. I’ve seen 7 Orthopedic surgeons. First told sesamoiditis, then told no by others, done injections in my foot, then back, and 2 wanted to do experimental surgery, and others told me that they didn’t know, but go to Mayo. I was using crutches, and in 2/16/18, almost face planted, and since then I have scapula, shoulder, armpit, feels like ribs are super glued together, like pleurisy, right arm and funny bone constantly hurt. I’ve had 4 EMG/NSC testings that show now nerve damage. I’ve seen 4 neurologists, and one neurosurgeon. The neurosurgeon told me my back and neck are fine, and the neurologist have no idea. I started having trouble shallowing around a year and half ago, and a gastroenterologist stretched my esophagus and told me I had stomach acid. I fell off a step stool and broke my 5th metatarsal 8/18/19. The bone healed, and was never given a new MRI until 6/9/21, and it shows I have inflammation in that foot. I started having stomach, urine, and bowel issues about 2 years ago. First it was the urine, where slow to go and had 8 UTI’s in one year, then I had bowel issues, where I could have diarrhea 10-15 times a day, for several days, and then be normal. The urologist has no idea. Tried different meds., and made me sicker, off them, and that’s when I got C/Diff twice in the year with the UTIS, and Covid year. First time I went in the hospital with it, the 2nd time I refused, because Covid was so bad, but wouldn’t clear up, and I had a UTI, 4/20, was admitted. I was given a med. to then try to prevent, C/DIFF, May of 20. I know will have bowel movements at night, with out knowing it, or all of a sudden during the day. I have severe stomach cramping, nausea, vomiting, migraines, and about 6 months ago I stated getting a lot if sores in and outside my mouth. The dentist has no idea. I’ve seen 3 rheumatologist and lots of bloodwork, but no answers. I’ve seen internal medicine Drs., 2 Gastroenterologists, in Pain Management which helped at first from a 10 to a 8 on good days. I’ve had endoscopies and have inflammation in my small intestines. I’ve been in and out of the hospital, because I will vomit for days, not even keep water down. I’ve had my bile ducks blocked. I’ve seen an Oncologist, Immunologist, several, Allergist, and no one knows what is wrong. I went to a Dr. in Pawtucket, RI, because one dr. had mentioned CRPS, and he specializes in it. No I don’t have it, not really sure. I went to the Cleveland Clinic, and saw 2 Drs. for about 10 minutes each, and one for 15 minutes. The only test they performed was another EMG/NCS testing, which had been done several times before, and they have no idea, except I was severely under weight. I’m 5ft. 6in, and struggle to keep my weight at 100lbs. Just before this happened, I jog and walk 6-8 miles a day, and was fit and healthy. A little over a week ago my husband was helping me down our 17 wooden steps, and he was going too fast, and I fell down 4 of them. I wanted to go to ER then, but since I could drive, I had to wait 5 days and go, to my primary. She ordered an X-ray, no broken bones, and had a stat MRI done last Thursday. I went to my new Orthopedic, saw PA the next day, and he told me I sprained my ankle, and had a bone bruise on the top and bottom of my foot. He put me in a boot, and told me to stay off it, for two weeks. Wanted me to use crutches, but told him I can’t because of upper right side pain. So I’m to use a walked to go to the bathroom, and shower every 2-3 days only. There will be no PT for 5th Metatarsal, which no hurts worse. The doctors have probably taken at least 120 vials of blood or more, at least 10-15 MRIS, countless CT Scans, ruling things out. Sometimes my numbers are good, and sometimes they are bad, for the same thing. I see a counselor and psychologist, but I becoming hopeless.
My Dr. tried to get me into Mayo over 2 years ago, and was told I could be helped here. She recently tried internal medicine, did peer to peer and wrote a huge file, and was denied, because I can’t go into internal without a diagnosis. That’s why I’m going. I was told to try GI, and just found out 7/16/21 that I was denied, because I would have to go off my low dose of pain meds. for 2-3 months. What do they do with people with chronic pain. I’ve never abused my meds. or asked for more, even though my Gastroenterologist, Primary, Oncologists (breast cancer survivor, which was easier), and Primary say are too low. I just get pain waves, sweat, and vomit. I don’t sleep, just doze off and on, and sweats are terrible, like taking a shower. I have brain fog, fatigue and severe eye burning, and will go blurry, and have spasms. Plus I bleed out the right side of my vulva lips, and burns peeing ir not, antibiotic cream hasn’t helped in a month of usage.
How do you get into Mayo. I don’t want to lose so much weight, my heart stops. Oh, yes, brain fog, breathing issues.
I’d appreciate any help. I’m scared. Yes, people cry, we’ve been all over, and the Drs. tell you to go to Mayo. You get scared you might die, and all you want is a chance. I have good insurance and am will to pay, for hotels, and expenses. Just why can’t I get in. I know of people that have gone there and they’ve helped, really helped. No we have no Mayo Drs. in the Denver/Boulder are. Please help!

Hi @lisagraber, and welcome to Mayo Clinic Connect. Mercy, you sure have had a host of things happen to you. I know how frustrating it can be to go through so many health problems and not have the answers to help you get better.
Have you ever heard of Mayo Clinic's Pain Rehabilitation Program? Mayo Clinic's Pain Rehabilitation Center (PRC) helps people with chronic pain return to a more active lifestyle. Teams based at Mayo Clinic's campuses in Arizona, Florida and Minnesota use a rehabilitation approach that incorporates behavioral, physical and occupational therapies to help restore physical activities and improve quality of life. The program also helps participants eliminate the use of pain medications and decrease the use of other medications that can impact health and quality of life in the long run.
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

I see that you have seen a number of physicians, but have they ever had a comprehensive approach to your care by having multiple people check you out? Also, what medications are you currently taking?

We are trying to get in as well for very similar situation to yours. Started with a cough in Dec. 2020 went to pain upper left abdomen. Have done MRIs of all spine, which showed some wear and tear and neck has spurs..I’m 51 so pretty typical for my age. I also would have tingling over my upper left shoulder and chest. Ive always had a knot in between my left shoulder blade and my spine. Went to OMM she worked on it and now I can’t get a deep breath for over a month. I also. Or have two left toes that go numb and right ankle throbs with pain. Where she worked on knot throbs with pain as well. Have some pins and needles in limbs. Seeking appt with Rheumatologist because blood work came back with double dna and elevated ana tired of 6.0. They thought Lupus but I have no other signs of that. Rheumatologist appt is in November. Neurologist is in Dec. I barely get through each day and lay down. A lot. It hit like a wall I’ve never even really been sick before in life accept a short bought with ulcers in colon. I eat extremely healthy and used to exercise. The Mayo said that get 250 requests a day for new appts. So we just have to hang in there. I feel like I am losing function of my legs like you as well. Breathing is my worst problem. Praying you get in soon. Your story is very similar to mine. They just put me on 5 day course of Prednisone. Will let you know how that goes. Hang I there. Praying we get in soon.

Thank you, and my heart goes out to you! Please keep me updated on how your doing.
I know how hard it is to be sent to this Dr., specialists, and then the next. I’ll hang in there and you do the same.
I did have breast cancer, stage 0, DCIS, and I’m thankful I go for mammograms, yearly, and had my first at 29, because I’m so fibrocystic. That surgery and reconstruction was easy. I barely took a pain med., and came home from the hospital, and asked my husband to please wash my hair, 4 drains and all. I went to friends for Christmas dinner, 4 days later, with drains pinned in pants. I was off pain meds., in a month, and didn’t take as much as prescribed.
I was an avid jogger/walker, 6-8 miles a day, snow or heat. I woke up on 1/9/18, cleaning, laundry, and put my boots on to pick up my son, to take him to lunch. I thought there were rocks in my boot. Nope! Pushed on and picked him up, because my favorite thing is spending time with my two sons. I just turned 61 and this has been happening since I was 57. This is a beast of a different nature. Really scared I’ll lose my sight. I have so much pain in my right eye, and my dad had macular degeneration, two of his sisters, and my grandmother. My eye Dr. tells me no, and so does the specialist. I just want to know what is happening, more as time passes, and my sight will go blurry, and eyes burn. I thought Mayo took cases, that others couldn’t figure out. My specialists, primary, and the hospitals are telling me to go. I know people that call and just get. I don’t understand. I just want to know what’s going on with my healt.
You are on my prayer list to get answers, and hopefully your able to get into Mayo.
God Bless, Lisa

Hi Amanda. Yes, they are working as a team, but have no clue. I even saw a Dr. in Pawtucket, RI, that specializes in a diagnosis. One Dr. had told me it was CRPS, and this Dr. that specializes in it, told me no, and wanted to put me on a bunch of different meds. They all told me no, that’s no it. For the life of me, I can’t remember, but it’s in my huge medical box, which I’m not moving due to my sprained ankle, and bone bruise on the bottom and top of foot.
I take a prescription mouthwash, called Chlorhexidine Gluconate 0.12%, because I have sores all over in my mouth and lips, dentist and dermatologist don’t know why. I use Mupirocin Ointment, 2%, because I have on one side an 1 1/2 cut, and the other an inch cut, in my business area. I take Pantoprazole 40mg, am., because I have inflammation in my small intestines and have had to had my esophagus stretched, and will need done again. I take 600mg of Gabapentin am. 300mid afternoon, and 600mg at bedtime.nerve pain, they believeI’ve had I believe 4-5 EMG/NCS testing, and don’t have nerve damage. One of those tests are enough, right arm, scapula, shoulder, and some on right leg, where I have severe pain. I take Hydromorphone 4 mg every 4 hrs., but wasn’t taking as much until my ankle and foot injury. I tried not taking as much before. I’ve never raised my dosage or asked it to be changed from the first time. It would be at a 7, but usually an 8 pain level, good days the 7, and that was me not being able to do much. Right now my whole body is shaking from the pain, and I get pain waves, and vomit. I started taking Clonazepam 3 times a day, at .5mg per my Psychiatrist, counselors, and other Drs. I never had anxiety like I do know. I feel like I’ll never get into Mayo, to at least have the chance to be looked at. You feel unworthy, that they don’t care about you. I tried PT several times, Chiropractic, massage, acupuncture, ketamine infusions, and nothing has helped. They’ve put me on other meds., and I’ve had bad side effects, and had to go off of. I have constant migraines. I have aura migraines, botox did help tremendously, but scared to go back. No one knows what is causing my eyes to burn and go blurry. Just using eye drops over the counter. I scared to death to lose my sight. My father, 2 of his sisters, and his mother had macular degeneration, but that’s not what’s going on. They don’t know. I can barely keep my weight at 100lbs and I’m 5ft. 6 in. I know am skin and bones. I have night sweats, sore throat, the pain in my body parts, plus many days it feels like I’m having labor pains. I will have diarrhea some days 10-15 times. My gastroenterologist can’t figure it out. I have to go to bed with a towel or one of the pads, that the hospital uses, because I’ll have a bowel movement at night. One day my blood work is fine, and the next it isn’t. I end up in the hospital because, I’m vomiting 5 days in a row or more, and am so dehydrated. I can run a 95 temp. in the morning, and it can be as high as 103 something in the evening. Oh, yes! I’m taking ibuprofen for the swelling in my foot and ankle, per Ortho, until the swelling goes down. I do have to alternate between Aleve and Tylenol, for my temps. Right now just ibuprofen.Yes, I make sure I don’t take too much of it. I’m aware it can be bad. I have brain fig and fatigue, but only doze.I can get about 6-8 hrs., sometimes a week or less. Yes, I’m so hurt that Mayo has not accepted me. Wouldn’t you be. I want a life again. I hope to hod grandchildren and play with them some day.i want a life again. I want to drive a car, again. I want to feel good enough to go out with my family and friends. I feel like I always have the worst flu and pain on top of it. My friends are shocked, how I look. They are scared for me, and my one son is angry and scared I’m going to die. He can’t understand why I’m overlooked. Oh, I have toenail fungus on my right big toe. did laser, and Jublia on it.
General Internal medicine turned me down, because I didn’t have a diagnosis. I thought Mayo was good at that. I’ve known many friends that have gotten in, and no one can understand why I can’t.
Maybe you can help me with that. I don’t want to die. Please help.

@lisagraber How far are you from Mayo Rochester? Asking because I have read on Connect that if you show up in the ER, they can't refuse treatment. Whether or not this is true I can't attest to, but it could be worth a try. Good luck

Hi Dave. Thank you so much for replying. I truly appreciate help I can get from anyone. I live in the Denver/Boulder area. My husband and son, have already offered to drive me. They are concerned about my declining health. I’ve also had quite a few of my specialists, telling me to do so, even my Primary Dr., has told me to try it. She’s been my Dr. for over 18 yrs., and has tried to get me in. She has written to them in length, about my declining health. She knows me, and how active I’ve always been. She use to tell me, that she wished, other patients, of hers were as healthy, and took care of themselves, as I did. Things sure changed, literally over night, for something I couldn’t even phantom.
My family would drive me there. I just hope ER would admit me. I know things can’t continue, with me getting worse, because it’s really a struggle everyday. I tell myself, “One minute at a time, and you can do this.” It’s gotten where it’s so painful and hard to go to Dr’s. appointments. You laugh, I know go in my pajamas, makes it easier.
I know Mayo states they don’t turn anyone away. This isn’t true, because I have, 3 departments. One told my Dr. on a peer to peer, I had to be diagnosed first. Well, that’s why the Drs. and I want me to go. I’ve know refuse to take certain meds., because of side effects, and they are just guessing, and the Drs. have told me so. The Drs. understand, that I don’t want those meds., when I don’t have a diagnosis. Some have made me so sick, that I end up in ER., and sometimes admitted.
God Bless you, for your valuable information. That is probably what I will do. My primary is still making phone calls, but I’m losing hope. I thought Drs. took an oath to help. I’m not so sure if Mayo Drs., believe in that. I just want some type of quality life again. Hears hoping I can get in by going there. I pray everyday for it, and all the other suffers. This, too, has been so hard on my family, watching, and being rejected. My son that turns 28, in 7/30, is so angry at the Drs. there, and he breaks down crying. My husband doesn’t understand why, and hates to see me in pain. My 25 tear old, is just plain angry, and says that they don’t care. That they can’t be the top hospital, if they don’t care about patients. I need answers and help, from Drs. that will really check out for rare things, as my primary tells me that Zebra. I’ve seen so many specialists here, so many tests, and given enough blood to feed a vampire.
Sorry, that I went in and on, but it helps to know that others care. Thank you, fir being a caring, kind, and compassionate person. Please stay well. Lisa

I am sorry for situation you are in, but I do not agree with what Dave said about just showing up at Mayo's ER. If it is not an emergency, you may be seen, but will probably not be admitted. Then you are in Rochester in same situation you are at home. Showing up at ER is not a guarantee of getting an appointment at Mayo.

In addition, you are taking resources away from emergency's (heart attacks, stokes, trauma, etc...)

I would think twice before jumping in car and showing up at ER.

Laurie