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Posts (4)

Jan 24, 2018 · Power wheelchair / scooter rental: pros, cons? in Visiting Mayo Clinic

More that I don’t necessarily want to just go around the hospital and my hotel and that’s it (although it does seem like there aren’t a lot of things in Rochester that aren’t the hospital or hotels) — on bad days (which I suspect these will be because of the pace and the earliness of the appointments) having wheels helps me be able to not be a) exhausted and b) bored out of my mind. Although I guess that’s a follow-up question: *is* there anything in Rochester during the winter to do other than hospital appointments and huddle up at home with 3 sweaters on?

Jan 23, 2018 · Power wheelchair / scooter rental: pros, cons? in Visiting Mayo Clinic

(Me again!) With the pace of my appointments at Mayo and my fatigue level, I’m wondering if I should think about renting a powerchair or scooter in Rochester. I read someone’s blog post who that she’d found it very helpful, but I think she traveled there in spring or summer and I’ll be there in the winter, and I don’t know how wheels-friendly MN winter weather is. I have a scooter at home, but the process of disassembling it and reassembling it every time we need to get in a car has become too much for me and my mum, so I mostly use it on public transit and around the neighborhood. (Tbh since it doesn’t have a tilt function using it can be pretty tiring too.) I know Mayo has free manuals to use in the buildings, but I like having a degree of independence and pushing me around all day is very tiring for my mum. On the other hand, the power chairs that I saw on all the rental sites aren’t that great either — some of them fold or disassemble, but they’re still heavy af, and the ones that look like they might be slightly less exhausting to use can’t be folded or disassembled at all.

Does anyone have any experience with this?

Jan 16, 2018 · Been assigned to the wrong specialist/clinic? in Visiting Mayo Clinic

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.