The Multiple System Atrophy Journey or Who Lives in Your Village? | 2021 MSA Coalition Conference

Tom Chelimsky, MD Medical College of Wisconsin, MSA Coalition Emeritus Board Member and Physician Advisor shares the journey an MSA patient goes through.
This presentation was made at the 2021Multiple System Atrophy Coalition 32nd Annual Patient and Family Conference

[@suehall2774]

Thank you for sharing this entire discussion. My Husband has been diagnosed and he said okay now what.

[@C-Dub-K]

Not just a feeling of relief with dx, but also a feeling of validation…Thanks for all you do Dr.C 🙂

[@GMHG777]

Ibtakenit you knew you were sick and everyone around doubted and or didn’t support you ? I’ve been in that nightmare for the last 4 years or more if that’s what you are referring to. Mine is likely more Autonomic Neuropathy (that is still not fully diagnosed) but could be MSA although I am close to 9 years in from my first symptoms and I’m still able to walk and talk but practically all the other symptoms of MSA are there and have been accelerating since late 2013. If I may ask where and whom diagnosed you ? I truly don’t know who to turn to after this length of time …

[@GMHG777]

@@HonorableHarbinger i was formally diagnosed w/ sensory autonomic and peripheral poly neuropathy on July 17th. Hope you fair better than I did. My Sr said i could live 2 weeks, 2 months, 2 years, or .. she has no clue and as sick as I now am 24/7 I’m hoping this is over very soon, as I am miserable, juts can’t bring my self to end things on my own … yet. Sorry you are dealing with this, hoping for your sake they find it’s something more manageable and treatable than my situation!

[@GMHG777]

@@HonorableHarbinger no functional movement people in my area of PA and every major center, like U of Penn and Cleveland Clinic denied me because of Medicaid plan (i cannot work and haven’t since Nov 2019, had to sell everything i owned like a my vintage guitars, to survive and live with my 82 year old father whose health is failing) mine is likely not MSA although a lot of the autonomic dysfunction is similar … i’ve had 4 neuros essentially pass the buck on me repeatedly, family has ghosted me mostly except my old man who doesn’t understand the gravity of my situation … really f**ked to hear you are under 40 man that bullshit, at least i am pushing 58 and had a significant run to this point, but like you i can’t barely function or walk or breath/digest/and produce waste properly, sexual dysfunction, BP/HR abnormalities, temperature/sweating dysregulation…. vision distortion, insane burning in feet, hands, eyes, face, gut … this isn’t any way to live believe me ! Not remotely as functional as i was last January … the speed this is finally moving at is terrifying !