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.