- CASE FILE
I have been to Mayo Clinic and left with a diagnosis of a Degenerative Neuro Muscular Disease of unknown etiology. Not very helpful.
ABOUT THIS CASE FILE
Over the last year I have experience a sharp decline in my visual acuity, ability to walk, stamina to complete tasks such as ADL'S and household chores such as dish wahing. When I do not have shoes on to provide padding, I tend to walk on the balls of my feet to reduce pain. When I leave the house,I now being a rollator walker and use the seat to take breaks. The more I push myself,the worse the pain and it is harder to recover from. While I was born with multiple congenital malformations including Spina Bifida which led to tethered cord syndrome; no one can explain the sudden decline. I had a sleep study in 2014 that was clean but now in 2019 I was found to have 60 apnea episodes an hour. While the CPAP has reduced my hyersomnia, I am still easily exhausted requiring a nap after a trip to the grocery store. While I was born with low vision, it had been stable and able to be corrected until this past year. I have had MRI, MRA, seen a Neuro Ophthalmologist, Neurosurgeon, neurologist, pain specialist, physiatrist and now working with a palliative care specialist. I never received an explanation for my cryptogenic stroke of the young at age 33 and I am now 45. I also have an essential tremor, myclonous, kidney disease, deaf in my right ear, No one can give me an explanation for the changes or a prognosis.