Dyspatient

Thanks Janet!

You're welcome! Glad it was helpful. Don't be shy about researching schools online too, I just looked and found pages from Dartmouth and Brown's med schools specifically on med students with disabilities, there are dedicated coordinators for med students with disabilities at some schools, which is perfect because they will have thought of things I didn't. Meeting with them early on is a good idea. Don't feel bad for not thinking of rounds/clinical rotations. Sometimes it's easier to see these things when you're an observer. I had 7 years of watching residents, interns, and med students do rounds on a surgical unit. Never saw anyone pass out, but I saw a few who looked like they were close to it .

Hi, I checked in the doctor listing and didn't see anything closer than Chicago so I'm asking here... I have a good friend in Indianapolis who really needs a doctor. She's been living there for about 5 years now, she got a primary care who isn't great but who can at least do things like see her for sore throats...otherwise not so good with the chronic "mystery illness" stuff. She's was given a vague "it's probably fibro" diagnosis a while ago, but in the past year she has had several episodes of near syncope, usually after exertion (walking dogs in the summer) that sound a lot like a hyperadrenergic POTS moment. Recently, she's started having these even in the cooler weather. She's tried finding a good doctor in Indy on her own, but hasn't had a lot of luck. She won't go to the ER or call EMS when this happens, like so many of us with chronic illnesses, she's had her share of ER write offs and is very reluctant to go now. She lives alone and I worry about her passing out and not having anyone to help her. If she knew what was happening, I think she could at least take steps to prevent it or mitigate it, or know when she needs to call for help. So, if you know if a good doc, POTS/neuro/cardio or just a good internal medicine/primary care doc who can help get started in diagnosing her, I welcome the suggestions. Thanks!

Hi Libby, I can take a swing at this. My background is 7 years as an inpatient unit clerk (surgery), 5 years working in college/university disability services, and additionally I'm someone with dysautonomia who has requested accommodations in a PhD program and at work for myself. Not always successfully I might add, but then the PhD was the worst and it was quite a while ago. Things have changed somewhat since I was in my PhD program, more students coming through post secondary ed with declared disabilities for starters (although the majority of those are learning disabilities, so that skews the experience of school staff toward that accommodation set, but the general influx still benefits all of us). I think you're on the right track. You have to write up and request your accommodations as if for your "worst" days, not for days when you can maybe push through without accommodation. Remember that accommodation is about two factors: you and your environment. You may want to get some more information about the typical day to day for a med student at schools where you're considering going. Accommodations can be "tweaked" after the fact, added, modified once you have more info, but remember that they cannot be retroactive. If you miss a class or do poorly on an assignment because an accommodation should have been in place but wasn't, then there's no "do over". So you have POTS and GP (me too). Anything else? Insomnia/other sleep disorder? Chronic pain? (I have Ehlers Danlos, and this combined with "brain fog" means I move badly often and hurt myself easily when I'm fatigued). I'm going to write below from what I know about POTS/syncope type stuff and GP. Access to any campus transportation for "handicapped" students and staff. Some campuses are tough to get around, some have vans that can be used. Have it listed, that way if there is a shuttle, you can use it. I know a lot of schools don't have this....I'm actually thinking back on my first husband (and ER doc) who destroyed a tendon in his foot while in med school and who was left to hobble his way around Boston in the Winter by public transit by the school. Yay med school. That was just after the ADA was passed into law though, and a LOT of schools were behind the times then. Transportation for temporary or permanent disability is a growing need at most universities so hopefully, wherever you end up will have this. Parking. On some campuses, you don't need a state permit to use the campus handicapped spots. At some point in your med school training, you will be off site though, and you may want to look into a state parking pass. I asked my doctor to avoid mentioning syncope in my request, we focused on the EDS/pain symptoms instead, I didn't want an over aggressive DMV person questioning my ability to drive.Priority registration. I don't know if this is even possible in med school, since so much of the curriculum is fixed and static, and it's not like classes are all over the schedule, but priority registration is something that is done for students who's health care needs (appointments, self care, medication) might necessitate avoiding certain times of day, or reducing how spread out the day is (or how congested). Access to a refrigerator/kitchen area. If your GP flares, you will need this. I sure do. Can't carry soup and pudding around with me all ****** day. Also, if you use cooling garments, you may need access to a freezer to store replacements ice/cold packs.Ability to use cooling/heating/compression garments. This may require a modification of dress code or classroom/lab policies.Ability to use elevator/escalators (some attendings/faculty like to do rounds via stairs. no. not on a bad day.)Ability to use a rolling bag and that space be made for it at med school events and classes.Seating/priority seating at all classes, labs, events, etc. Some talks can end up as standing room only. Not ok for you. Also not ok, clambering your way across laps to get to and from your seat if you ever end up developing some "lower end" effects of dysautonomia (e.g., I have polyuria now, and let me tell you, I sit at the END of the row every time whenever I have to sit in assembly seating). If things get bad in the later years when you have to do rounds, consider a "rollator" for rounding. You'd have your chair with you. I'm almost at the point where I need one, and if I had to do something like rounds, I would most certainly require one now. Ability to take breaks for snack, restroom during lectures, labs, practica, etc.Access to a break room with a couch or office with a yoga mat at least. There will be times when you need to lay down. You don't want to go through the trouble of finding a lounge where you can lay down if you need to only to get told med students aren't allowed in here or something like that. Consider it like this: nursing mothers now have to be provided with rooms to pump at work under provisions of the ACA. Shouldn't POTS-ies have access to a g. d. couch?! Heck yeah. I had one at my last job and it's a big part of why I was able to stay working full time. Extended time and reduced distraction environment for exams due to fatigue and cognitive issues from POTS.Electronic texts. Books are HEAVY.Use of laptop or mobile device in class, lecture, lab, practica, etc. Use of recording device such as a smart pen (amazing, super awesome device, especially for someone who might have trouble keeping up with notetaking and auditory processing due to cognitive burden of POTS/CFS type stuff).Discuss modification of attendance policies for tardiness (esp. if there is no campus/med center shuttle) and for medical care and appointments. They may reject this as "unreasonable" in med school, but it doesn't hurt to bring up with the disability office. Extended time on assignments. Let's see...that's all I can think of for now. You wouldn't need to use all of these all the time, hopefully you'll have to use them only rarely during a flare. But having them there is so important. A last note: The nature of the latter years of med school is such that someone from the school's Disability Office is going to have to coordinate with your work/clinical sites to make sure you have reasonable accommodations while you're at those places. Keep that in mind, and be as proactive as you can on it so things don't fall through the cracks. Document everything, oral discussions about your disability and accommodations are ok, but follow up with emails, e.g. "thank you for talking with me about....I just wanted to summarize our conversation on..." and save and archive those emails periodically. No one likes to sue, but sometimes you need to complain to get what you need. Good luck!

Oh no! This is why I've been putting off these exact tests myself. I can't imagine going a week without laxatives of some kind. I hope you've gotten some relief since posting this. Miralax doesn't do much for me at all, two things I've found work better than miralax are magnesium and molasses (not together, yuck). I know you tried the mag citrate already, possibly a different form of magnesium? I've recently been using a supplement with mag gluconate and it seems to have a stronger effect on my bowel.

Thanks for the welcomes! gjensen, I am somewhat familiar with it. I haven't had everything in that set but I had some ANNA panels (1 and 2 I think? do they vary?), ANA, and g-AchR antibiodies. I always have a low positive ANA, and other than that, the only strange results were positive IFA on two anti-neuronal antibodies (Hu and Ri I think?) but they were both negative on the western blot. My primary didn't know what to make of that, and he and I would both prefer I see someone who works with these labs routinely rather than stick him with trying to track down which AchR antibody to order and then how to interpret. I did try to see an autonomic specialist, tried several times. Not much luck. Not sure if it's worth trying again or not. Bird, "Sometimes it feels good to stop, take a break, and come back to it when you are ready." Yes, definitely. I do that now and then. I see it as a tactical retreat. Sometimes it's really necessary to keep your sanity.

Hi Becia, I'm diagnosed with EDS also, just about three years ago. It was the first truly unifying diagnosis I had. It took a while to sink in for me, but I'm finally in the acceptance stage I think. I also have a lot of GI issues, I was diagnosed with gastroparesis in 2013 but had struggled with "colonic spasms","IBS", gastritis, and GERD for most of my life prior to the GP symptoms starting in full force. I recommend finding a GI doctor who is knowledgeable about motility issues, the "average" GI doc isn't always well equipped to handle EDS/GI stuff but I think the motility people are better, based on my own experiences with many (too many!) GI docs. And seek out a dietician consult. It's very important, I just discovered I have a raging magnesium deficiency that was contributing to a whole host of things like migraine, muscle spasms, and nausea. Good luck in getting some treatments. Although the diagnosis is pretty unifying, I've found the treatments are sort of "baby steps" type stuff, a little thing that helps here, and little bit that helps there.

I just joined the forum after using DINET’s resources for a while. I thought I’d introduce myself. I’m 43, living south of Boston, struggling with progressing autonomic dysfunction. I recently had to leave my full time job. I'm trying to do some work from home, but find that even that is not certain. There are just too many bad days. I'm planning to file for disability this year and have already spoken to both an attorney and my primary care (who says he'll support my claim). I have a great primary care, he is one of the few doctors who has consistently stood by me and believed me in this struggle. I’m looking to give and get support, advice, and for a place to connect with others who struggle with the same sorts of autonomic problems I do. It’s tough to feel like such an anomaly in other areas of my life, and I know from other forums that it helps to connect with people who can really relate from their own or a loved one’s experiences. I have a lot of frustration dealing with doctors, from having untreated neuro-Lyme disease from 2002 – 2004; and from my experiences as a child who passed out often and was misdiagnosed for years. I was not allowed to drive until I was 22 because I refused to take seizure medication for what turned out to be orthostatic (convulsive) syncope made worse by a tendency towards hypoglycemia. When I was very young, I developed lactose intolerance and suffered for years with weight loss and pain while the pediatrician berated me and told my parents it was all in my head. I have a lot of residual distrust from these experiences, the topic of many of my appointments with my psychologist. Just an fyi, I did see the forum rules about not defaming doctors and hospitals or calling them out by name online, which fits with my own personal approach as well. If someone asks me personally and off-line for my opinion about a particular doctor, I do share that. Online, I only name names if it’s someone I had a good experience with. In 2012 (at 40), after a lifetime of joint pain and passing out, I was diagnosed with a connective tissue disease, Ehlers-Danlos Syndrome, type III but with some family history suggestive of vascular involvement and a mutation on the COL3A gene of unknown significance. At the time, the EDS diagnosis explained a whole lot of my issues, however, I have new and progressing autonomic symptoms, some of which are a little outside of the typical EDS-dysautonomia linkages. These include a loss of sweating in response to heat (2013ish) and polyuria (2014) – it’s not just an overactive bladder/frequency with little product…it’s like my kidneys just dump all fluids straight out into my bladder without bothering to do much else so I just constantly have to go and go a lot. My other autonomic symptoms include POTS (2013), gastroparesis (2013), insomnia (2013), night sweats (2004), and a lifetime of orthostatic intolerance with hypotension and syncope. When I started having gastroparesis symptoms in 2013, I had a gastric emptying study that showed moderate gastroparesis. I pushed for an autoimmune autonomic ganglionopathy work up since that was consistent with my symptoms. It troubles me that I had to push for this. The GI doctor I who diagnosed me did not take the initiative in looking for causes and didn’t seem to take into account these other autonomic symptoms I had until I kept pointing them out. I finally (on my own) found a neurologist who would test for ganglionic Acetylcholine receptor antibodies and was told the test was “negative” but I can’t get the hospital to release the exact values. The neurologist I was seeing at the time didn’t really offer an explanation of the autonomic symptoms after we had that negative result. These symptoms have progressed even since then (the polyuria is new this year). This neurologist has since left his practice, and this leaves me wondering if it’s worth trying to start again with a new neurologist or just leave this as “probably EDS” a the cause of my autonomic symptoms. While I don’t want to start over with another doctor, I worry about further progression and failing to address this at an earlier stage which may spare me some loss of function. My resting heart rate is slowly decreasing. My last tilt table test showed POTS and I swear the increase in HR on tilt was more carried by the lower baseline that I now have (routinely in the 50s, sometimes dipping into the high 40s). I get runs of PVCs that scare the crap out of me but which I’m assured are benign. The polyuria is becoming another life ruling restriction. If I drink enough to keep my BP up (2 to 3 liters a day) I am in the bathroom every half hour with a full bladder, even with electrolyte supplements I just can’t seem to keep fluids in. In conjunction with the EDS, a full bladder means a lot of pelvic pain. I swear I’ve pulled a ligament just from going over a bump in a car while my bladder was too full – I was out of commission for days with enduring pelvic pain. I recently started researching a new neurologist for the autonomic stuff, Dr. Hohler is well reviewed but when I called to see about making an appointment, they said they need a letter of referral from my primary care doctor, even though I don’t need a referral for my insurance. I’m trying to give my primary care a break right now, I had a bad Autumn and had to see him and contact him a lot. So I may eventually ask him to write this letter to try out Hohler, although again, I’m so ambivalent about seeing a new neurologist that I’m not sure it’s worth my or my primary care’s trouble to try.