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!