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lofturthunk
@lofturthunk

Posts: 4
Joined: Jan 16, 2018

Been assigned to the wrong specialist/clinic?

Posted by @lofturthunk, Tue, Jan 16 2:15pm

I’m 25 and going for my first visit to Mayo in early February. For the last 2+ years I’ve had… well, “boring” symptoms — minor/moderate periarticular pain, minor/moderate muscle pain, repetitive stress injuries with no cause that never seem to heal, minor/moderate nausea & bloating, and a LOT of fatigue with a very regular activity-fatigue-rest-recovery-activity-fatigue-etc. pattern — that don’t have any objective proof (normal blood tests, normal scans). I’ve been tested for autoimmune, lyme, MS, EDS, a neuromuscular exam, EEGs, MRIs all negative or normal. I have been definitively dx’d with POTS (Postural Orthostatic Tachycardia Syndrome), but it seems to be pretty meh — I don’t have syncope, my standing HR never gets above 160bpm, and my resting HR is a little tachycardic for my age (usually in the 100-111 range) but I’m not taking medication anymore and it doesn’t really bother me.

However, I do have two mystery symptoms / symptom clusters that REALLY cause problems for me. #1 has been going on for about 1.5-2 years — it’s a little hard to describe, but I guess I’d call it leg instability. I can’t do more than 2 hours of sustained walking, *maybe* 1 hr of standing (sometimes just like 10-20 minutes), one quick (1-2 mins) burst of running, or any kind of leg muscle targeted exercise without my legs just… not being able to hold me up. I don’t faint, I’m not lightheaded, they’re not drop attacks (they’re not random), it’s not deconditioning, it’s not paralysis, I’m not sure if it’s strength or fatigue or what, but on good days I can use cane/crutches (or clench all my muscles really hard to give me an extra few minutes of standing time); on bad days I just collapse. Still continuing (although a little better than it was 1 yr ago); only thing that works to manage it is mobility aids, sleep, and a lot of sit-down and lie-down breaks; still no answers.

#2 is a symptom cluster — episodes of confusion, visual disturbance, double vision, sometimes not recognizing faces of people I know, sometimes not being able to talk (or talking very labored and slurred), partial paralysis (bottom half — sometimes lasts 20 mins, sometimes 24-72hrs) or more widespread paralysis (episode ‘aura’ hit, then couldn’t move anything but my eyes, and it took 1-3hrs for everything else to come back (legs always the last thing). It’s possible I’ve been having these for 6+ years (I previously thought they were weird panic attacks with no panic), but they’ve gotten more severe. Normal EEGs, no answers. Oh, and #3, I’ve had a few times of being hospitalized for uncontrolled torso spasms/convulsions whenever I stood up straight. Normal EEGs, MRI, etc., no answers (although it did respond to vagal maneuvers).

(All of this isn’t to bombard you with medical history — just to give context.)

All the doctors I’ve consulted for answers to #1-3 have either said a) it’s in your head, b) ¯_(ツ)_/¯, or c) go to Mayo, so I made an appointment. I got my prearranged schedule packet in the mail, though, and they put me in pain management and the Fibromyalgia Integrative Medicine and Health Self-Management program (with one neurology consult and one neurophysiology consult). I don’t need pain management — pain isn’t my problem — and I can’t mindfulness meditate away not being able to stand up. I’m looking for a dx, or at least something other than ¯_(ツ)_/¯.

So, my question — do I call them and tell them that the pain management stuff isn’t necessary, that I’m looking for answers for #1-3? Would my schedule change when I got there to my initial evaluation and I told them all this? I don’t want to be labeled difficult or treatment resistant or noncompliant, but spending 4 days out of a 7-day visit in a clinical program I don’t need or want (plus the money to travel there!!!) seems like a total waste of time for me and everyone there.

REPLY

@lofturthunk, Welcome to Mayo Clinic Connect. You have come here with a good question. I will share that Mayo operates as a team, and the different specialty departments work together to provide your care. So, even if you are not assigned to a particular department, I can assure you from my own experience, that you will be getting input from whichever department in needed. Many other patients have expressed similar concerns.

While we are waiting for other members to respond, you might find some helpful thoughts in you might find some helpful information by reading some of the discussion – First Time and Terrified where some members have shared their experiences with Mayo’s team approach. https://connect.mayoclinic.org/discussion/first-time-and-terrified/

Which Mayo Campus will you be visiting?
I would like to share the following resource:
Mayo Clinic in Rochester has Concierge Services to help make your trip go smoothly. They provide information about travel, lodging, Mayo Clinic and community resources to plan your visit to make your visit smooth and less stressful!
And it’s free.
Hours: Monday-Friday, 8 a.m.-6 p.m. CST by phone, 8 a.m.-5 p.m. in person
Location: Mayo Building, Lobby level, International Center
Email: concierge@mayo.edu
Phone: 507-538-8438

Rosemary

@lofturthunk, I don’t know which Mayo Campus that you will be visiting, but I want to share these patient /visitor guides for each of the Mayo locations.
https://www.mayoclinic.org/patient-visitor-guide

I hope that you find them useful.
Rosemary

@lofturthunk, I have the same concern about my upcoming visit to Mayo Rochester in mid-February. I am scheduled for 4 days of various Fibromyalgia clinics and consultations, but Fibromyalgia seems a bit out in left field for me. Based on your summary of concerns, it doesn’t even seem to be in the ballpark for you.

Like you, I am relatively young (in my early 30s), but, my symptoms are different. My doctors are sending me to Mayo because they suspect autoimmune disease(s), but are having trouble diagnosing. For the first three days of my visit to Mayo, I am scheduled with internal medicine and rheumatology which is what my referring doctor requested. Then last 4 days are the Fibromyalgia appointments.

I did call internal medicine to try to ask about the Fibromyalgia stuff. I got a what seemed like a default response. I was told that after the initial evaluation, they would add and remove appointments as needed. Beyond that, I had a lot of trouble getting information and the representative came across as a bit annoyed.

Maybe they get asked about this a lot? Do you think they just tack on the Fibromyalgia stuff if you fit a specific profile (perhaps younger and with a list of non-specific symptoms) because it is difficult to schedule if they don’t do it in advance?

My biggest concern is that it feels like they are already trying to diagnosis me when they have virtually no information about me. They just have the new patient form I filled out online and the referral from my doctor. The attitude of and lack of information from the representative on the phone has done little to allay my concern.

It is a very big step and investment to make the trip out there and I am already trying to fend off debt from years of medical bills. Mayo is the last resort for me. When you’ve been through enough experiences of wrong diagnoses, lackluster doctors, overworked nurses, and indifferent front office people, you become skeptical and start to get spooked easily. Do we just take a leap of faith and see what happens when we get there? I guess, what choice do we have at this point?

@rosymarya’s link to the First Time and Terrified post was somewhat helpful, but so far, my limited experiences have not been reflective of those stories.

@twinkletoes

@lofturthunk, I have the same concern about my upcoming visit to Mayo Rochester in mid-February. I am scheduled for 4 days of various Fibromyalgia clinics and consultations, but Fibromyalgia seems a bit out in left field for me. Based on your summary of concerns, it doesn’t even seem to be in the ballpark for you.

Like you, I am relatively young (in my early 30s), but, my symptoms are different. My doctors are sending me to Mayo because they suspect autoimmune disease(s), but are having trouble diagnosing. For the first three days of my visit to Mayo, I am scheduled with internal medicine and rheumatology which is what my referring doctor requested. Then last 4 days are the Fibromyalgia appointments.

I did call internal medicine to try to ask about the Fibromyalgia stuff. I got a what seemed like a default response. I was told that after the initial evaluation, they would add and remove appointments as needed. Beyond that, I had a lot of trouble getting information and the representative came across as a bit annoyed.

Maybe they get asked about this a lot? Do you think they just tack on the Fibromyalgia stuff if you fit a specific profile (perhaps younger and with a list of non-specific symptoms) because it is difficult to schedule if they don’t do it in advance?

My biggest concern is that it feels like they are already trying to diagnosis me when they have virtually no information about me. They just have the new patient form I filled out online and the referral from my doctor. The attitude of and lack of information from the representative on the phone has done little to allay my concern.

It is a very big step and investment to make the trip out there and I am already trying to fend off debt from years of medical bills. Mayo is the last resort for me. When you’ve been through enough experiences of wrong diagnoses, lackluster doctors, overworked nurses, and indifferent front office people, you become skeptical and start to get spooked easily. Do we just take a leap of faith and see what happens when we get there? I guess, what choice do we have at this point?

@rosymarya’s link to the First Time and Terrified post was somewhat helpful, but so far, my limited experiences have not been reflective of those stories.

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@twinkletoes, I want to say, “Welcome” to Mayo Clinic Connect. Thank you for entering this discussion, and for sharing your concern about your upcoming appointment.
It must be very stressful and frustrating for you to be making such a big leap of faith into an unknown environment. I am happy that you found a little comfort by reading the First Time and Terrified post. It is so hard to know what to tell you, because we are all so very different – so very unique in our medical needs and situations. I do feel confident to say that the person on the phone was correct that your appointments would be rescheduled as needed. Mayo has a way of getting the results quickly, and then individualizing your care. It is a team approach. You might see one doctor, but he/she will consult with other specialists.

Rosemary

Hi, @twinkletoes and @lofturthunk — thanks for posting your concerns here. Please be assured Mayo Clinic would want you to feel comfortable and confident about your care — even before you arrive — and your schedule for your time at Mayo. I’d ask that you please call this office to speak to someone about your concerns Monday, if possible:

Office of Patient Experience
Mayo Building, lobby level
8 a.m. to 5 p.m., Monday–Friday
507-284-4988
Staff are available to discuss comments or concerns you may have regarding your medical care.

We’d also welcome you to keep participating here in this online community, Mayo Clinic Connect, so that members can offer insights about any of your medical concerns as well as their support prior to your appointments.

@lofturthunk– Hello and welcome to Mayo Clinic Connect. Thank you for posting.

I believe your questions are appropriate. However, as @rosemarya said above- Mayo, as a whole works together to create a treatment plan and array of appointments to best suit each individual. I’m sure the Fibro clinic and pain clinic were set up in lieu of time management while you are here for your appointments. Those clinics are booked out far in advance and in order to accommodate your schedule in a timely fashion they are prescheduled. Talk with your physicians at your neurology consult and neurophysiology consult and see what they say about the need to keep them.

I hope this helps with feelings of uncertainty. I look forward to hearing an update from you. When are you scheduled for your visit?

@jamienolson

@lofturthunk– Hello and welcome to Mayo Clinic Connect. Thank you for posting.

I believe your questions are appropriate. However, as @rosemarya said above- Mayo, as a whole works together to create a treatment plan and array of appointments to best suit each individual. I’m sure the Fibro clinic and pain clinic were set up in lieu of time management while you are here for your appointments. Those clinics are booked out far in advance and in order to accommodate your schedule in a timely fashion they are prescheduled. Talk with your physicians at your neurology consult and neurophysiology consult and see what they say about the need to keep them.

I hope this helps with feelings of uncertainty. I look forward to hearing an update from you. When are you scheduled for your visit?

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February 5th through 13th.

@lisalucier

Hi, @twinkletoes and @lofturthunk — thanks for posting your concerns here. Please be assured Mayo Clinic would want you to feel comfortable and confident about your care — even before you arrive — and your schedule for your time at Mayo. I’d ask that you please call this office to speak to someone about your concerns Monday, if possible:

Office of Patient Experience
Mayo Building, lobby level
8 a.m. to 5 p.m., Monday–Friday
507-284-4988
Staff are available to discuss comments or concerns you may have regarding your medical care.

We’d also welcome you to keep participating here in this online community, Mayo Clinic Connect, so that members can offer insights about any of your medical concerns as well as their support prior to your appointments.

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I called the Office of Patient Experience yesterday. The conversation and information were MUCH better and I got all my questions answered. Thank you for suggesting this.

@lisalucier

Hi, @twinkletoes and @lofturthunk — thanks for posting your concerns here. Please be assured Mayo Clinic would want you to feel comfortable and confident about your care — even before you arrive — and your schedule for your time at Mayo. I’d ask that you please call this office to speak to someone about your concerns Monday, if possible:

Office of Patient Experience
Mayo Building, lobby level
8 a.m. to 5 p.m., Monday–Friday
507-284-4988
Staff are available to discuss comments or concerns you may have regarding your medical care.

We’d also welcome you to keep participating here in this online community, Mayo Clinic Connect, so that members can offer insights about any of your medical concerns as well as their support prior to your appointments.

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Delighted to hear this, @twinkletoes. Hope your February visit is very helpful.

@jamienolson

@lofturthunk– Hello and welcome to Mayo Clinic Connect. Thank you for posting.

I believe your questions are appropriate. However, as @rosemarya said above- Mayo, as a whole works together to create a treatment plan and array of appointments to best suit each individual. I’m sure the Fibro clinic and pain clinic were set up in lieu of time management while you are here for your appointments. Those clinics are booked out far in advance and in order to accommodate your schedule in a timely fashion they are prescheduled. Talk with your physicians at your neurology consult and neurophysiology consult and see what they say about the need to keep them.

I hope this helps with feelings of uncertainty. I look forward to hearing an update from you. When are you scheduled for your visit?

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@lofturthunk I just remembered that your appointment started last week. I really hope you feel like you are getting the answers you need and that Mayo is getting you to the right places. Best of luck to you on your journey.

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