Im going to do everything in my power to keep this short. I’d like to think I’m a strong spouse and parent and on the outside I am, inside I’ve already accepted my demise and sadly await if not look forward to this disease ending the recurring and escalating my torture. I don’t think this is how life is supposed to be lived, and I’m scared. I’m a single dad of two with 100% full time custody and a self employed contractor. Worked my ass off to give my
kids a stable upbringing, and love hard rewarding work. One day I was ripped out of a tree I was shaping and torn under a branch like a slingshot. I should have died or at least been paralyzed. Instead just one slipped disc in the wrong spot. Begging and denied operation I opted for a lumbar steroid epidural and had high hopes of reducing pain. Here’s the weird part. THREE days later I collapsed in a store and woke several days later in hospital. They had no idea except to say herpes (the chicken pox kind I later found out) had somehow managed to drop a otherwise healthy man. But accompanied neurological symptoms slowly emerged. First blurry vision and balance issues, then out of nowhere I was totally 100% actively suicidal for no reason! I knew it wasn’t right as I had a happy home and content with life. I fought ridiculous psychotherapists who really don’t care much about patients, even sought help at a darn inpatient mental hospital... and let me tell you something here.. they only want your insurance money and do nothing to help. After dodging the punishment following my attempt asking for emotional distress guidance (lol) I returned quietly to my broken lifestyle to acquire new and improved feature symptoms. I knew something had gone very wrong with the epidural and could feel the poison breaking down the basics of my inner workings. I begged drs and hospitals for help. I would arrive at ER with stroke like symptoms and even test positive setting staff on high alert, then slowly drs would scratch their heads and eventually discharge me. Once a spinal tap I begged for initially tested normal, only to e sent home and immediately called back and admitted over a week trying to find the major infection in my CSF fluid. After a year or so of no dr willing to attempt a diagnosis, I began offering my theories as I was an excellent source of opinion. I offered theories like MS, arachnoidits, csf encephalitis, or even anthrax jokingly at this point. I was experiencing daily major vision disturbances, equilibrium and balance issues, major cognitive and emotional abnormalities that thankfully I decided we’re ridiculous and unwarranted, major fatigue and twitching or Mylonic jerks, heat sensory or body temperature issues, random numbness even the amazing MS hugs I don’t miss, and an overall sense of extreme illness including seizure like episodes nearing the stroke realm. Every new dr I met was immediately intrigued and fought with interest to crack the case, then slowly without admitting defeat fall into a state of mundane continuance without optimism. I have continually worsened
Cont... To wrap up after 3 years and another new dr, finally one saw demyelination disease on an MRI. At this point I’m severely disabled and can’t hardly get out of bed, as it takes hours. The pain is unreal and a past dr took the liberty of cutting my opioid medication in half, and I suffer casualty of the war on pain patients. I don’t know how I still have a house as I’ve had to sell almost all other assets, and every job I attempt is an embarrassment as I’m too fatigued to complete in a timely fashion. I think the pain is greater than will to endure it at this point as the symptoms continue to intensify, and I live only to be here for my children. Kids are always #1 right! I hope my new dr can start treatment ASAP, I think I can still turn this around. But what a painful and near embarrassing life to live just trying to treat a illness brought on by a Dr. Any ideas or advice would be lovingly accepted, I’ve tried all I can bear so far. Hope everyone has a wonderful evening! Ciao, Kyle
Hey Badwhiskey, Please let me suggest you call the National MS Society or go to nmss.org to find an ms specialist. I am not sure cutting the does of you drug was a good move, slow tapering off may have been a better move, call the pharmacist to check if it was a wise move, if the pharmacist says no get yourself to an emergency care place right away for assistance and get a new doctor who is not a masochist. A doc cut my zoloft from 100 to 50 for two weeks then zero and I went nuts with the pain, enough for them to lock me up.
It was the fall that tripped the switch for the ms to kick in, not the doctor. We most of us have trauma stories that happened before seeing signs of ms, me it was falling down the stairs, so while it is nice to be angry at a person, you can still enjoy that, know that he/she was not the cause.
What may be important for you to know, is that ms makes the nerves go nuts, sending all the wrong signals, the biggest one is pain, so concentrate on soothing the nerves with happy thoughts, fond memories, the beauty of your children and all the good stuff you can think of. The more aggitated you become the more the nerves will act up, do everything you can to quiet your mind, yes, it aint easy but begin on making it a habit.
Also remember that the brain controls the whole body and does what we tell it to, so tell your brain to fix the pain, there are a lot of connections that are shorting out so keep telling the brain to work on fixing the short. Also concentrate on the pain in one spot and describe it in detail to yourself, what it feels like, if it has a color, the shape, the weight, being as specific as possible and keep repeating the exercise as often as possible, it will help the brain to focus on one spot at a time.