One Advocate's Journey - A Cautionary Tale...
Hello friends! So throughout life, have never been one to back down, especially where truth and the pursuit of truth are concerned. Please do not let this story dissuade you from advocating on your own behalf. It is only being told to save another from experiencing anything similar, to show that you need to enlist help immediately when your own advocacy fails. This occurred prior to an RRMS diagnosis in late 2017 that was delayed unnecessarily, because of my attempts to seek truth against a very corrupt hospital group. Having been the co-founder of a children's charity in my surrounding communities, as well as the CEO of a national payment processing company 5 years prior, this hospital group had been both a good donor, as well as client of mine. This piece of info is important for later in the chain of events...
Spasticity and falls
Was declared disabled in 2011 for pain and depression from years of undiagnosed issues, accusations of being a hypochondriac, immune issues. Fell, while traveling out of the country in Asia, in 2015, at the beach one day. Thought I had blacked out, however in retrospect, it was a heat-induced bout of vertigo. After falling, had intense pain in my foot, looked down, then noticed a bone sticking straight out of the top of my foot. Oooops, nice view! After care from the local hospital, help from friends while healing, traveled back to Florida. After returning home, had a few more bouts of spasticity affecting gait, other neurological symptoms manifested, then fell again a few times, in and out of the heat.
Symptoms were of a neurological nature
Presented myself to one of my old client's many ER sites and was admitted after much debate. Although I thought I had passed out, having read Grey's Anatomy cover to cover since the age of 6, knew that these symptoms, all put together, were of a neurological nature - yet did not realize I was in the throws of an MS relapse. They ran blood tests, monitored my heart and scratched their heads. Because of previous issues with neck and back pain/injury, had a spinal stimulator implanted 2 years previously, so an MRI was out of the question - as the device was non-MRI compatible. My heart enzymes and heart rate were fine, yet they kept sending in a cardiologist. Asked for a Neuro consult, which was refused, as was my request for a walker or wheelchair - as I felt very unsteady/unsafe on my feet. They stated that while being observed for the 2 or 3 days there, they wanted to see if I could walk on my own. Explained the pain involved, the spasticity, etc. - all to no avail, with no walker or assistance offered. They assumed I was losing consciousness when I reported falling and that it must be heart-related - even though all heart tests came back perfectly fine.
I requested a spinal tap
They brought in the same cardiologist who said he wanted to implant a loop to record my heart activities. My reply was, "Even though my heart enzymes, heart rate, EKG, blood pressure etc. were all well within normal range, I'll agree - only after results from a spinal tap, to rule out any neurological issues." He left the room in a huff, I called my insurance company to ask if my request was within my patient rights, then was told not to leave the facility without a spinal tap being performed. Stumbled to the charge nurses station, recounted my conversation with the insurance company, requested nicely that they do a spinal tap. She slams her pen down, then says, "Oh you think you're in charge here? You are about to find out who's in charge in 5-10 minutes." Shook my head, asked to talk to someone from HR, then stumbled back to my bed - almost falling.
Discharged, told to leave, and denied a wheelchair
Sat in bed with cog-fog, along with meds in my system, when sure enough around ten minutes later - two security guards with batons out and the charge nurse entered my room. They told me that I was to leave their hospital immediately. I had been discharged. My immediate response was no... The guards began to beat their batons in their hands, the nurse raised her voice, I was in shock. After thinking about it for a few seconds in my impaired state, realized the quality of care was less than desired and that going to another hospital made more sense. Asked for a wheelchair to be discharged, began to remove my cell phone to call an ambulance to pick me up. Was told to put my phone down and get off the premises. Again, asked for a wheelchair as is normal protocol when being discharged from any hospital in the world, denied again. Then the threat of force began - both verbally and physically. It was used to make me walk from the room in my confused state.
So much for Hipprocratic oaths
Had this been a normal day for me, I would have simply sat back down, called the police and waited for a wheelchair. However, the cog-fog, meds administered and shock of these events had me shaken up, confused, as well as just wanting this to be over. Was made to gather my own belongings and told to walk to the exit and get off their premises. Again said I felt like I would fall, asked for a wheelchair again, was refused again, then they imposed their will and I began to walk with the two security guards, batons out, calling me names/taunting me from behind as I was attempting to walk. After about 200 feet, I fell. My head was bloody, my finger dislocated and blood was dripping from my arm onto the floor, as well as my possessions. I lay there, security guards demanding I get up, beating their batons, laughing. A doctor came out of a nearby cafe and said, "This man is injured, we need to get him help immediately, what are you doing?" They stated that someone from admin ordered my removal. Upon hearing the name of the individual from admin, the doctor shook his head side to side, looked at me, then said, "Sorry, can't help you." So much for Hippocratic oaths...
More verbal harassment and laughter
They refused my request for help up, finally gathered the strength to pick up my belongings, as well as my 6`4" 225-pound body and stumbled to the exit door. Pulled out my cellphone to call an ambulance, then was told, "You need to be off our property now, put your cell phone away." More threats, beating of the metal batons against their hands and was told that I needed to walk outside down their 600-foot long sidewalk and get to the street - prior to calling an ambulance. It was May in Florida, over 98 degrees outside. Although there was a railing I held onto, fell one or two more times, further bloodying myself, to more verbal harassment and laughter from the guards.
They thought I had Parkinson's
Eventually crawled off the sidewalk into the street where I lay, pulled out my cell phone, called 911 and lay there until an ambulance arrived. The new hospital immediately admitted me, cleaned me up after taking pictures of injuries, then performed a spinal tap as their first order of business. They observed me for 3-5 days if memory serves correctly, said the results of the lumbar puncture would be available in a few weeks through my GP doctor. They felt I had Parkinson's, put me on Parkinson's meds and discharged me. Had the spinal stimulator removal surgery scheduled, so I could get an MRI in a few weeks. Contacted the first hospital's HR department to relay the horrific events, asked for a meeting with the board of directors to make them aware of the quality of care and human rights violations that occurred, then asked for a copy of all video evidence of my falls on their property to be reviewed and preserved. The HR individual said she was conducting an investigation, months later received a letter stating that the security guards would be disciplined and that their investigation was closed. Tried to set up further meetings before involving an attorney, all to no avail. Only because they were ex-donors/clients.
90% conclusive for MS
Each time my GP called to come in for results of the spinal tap/lumbar puncture with my family, the results were never available. This occurred three separate occasions over the course of a few months. The relapse passes, then while out picking up dinner for my mom and sister one night, had some spasticity and heat-related vertigo that caused a car accident. Everybody was ok, however, I was in pain, they took me to the same hospital that performed my spinal tap, at my request. X-rays came back fine, heart checked out fine, blood work all good. Released. Before being released, I asked for a copy of the spinal tap results the GP could somehow not get, even though his practice was owned by this hospital group. It showed 90% conclusive for MS through CFS levels and other elevated proteins in my spinal fluids.
An MRI compliant pacemaker
Called a cab, came home and fell an hour later fracturing my orbital bone, cheekbone and almost losing my eye. Was found bloody and unconscious, rushed to the first hospital that had treated me so poorly, although a different location. Was told my heart was stopping every couple of minutes for 3-4 seconds, that I had sick sinus syndrome and would not live through the night without a pacemaker being installed – no defibrillator. Even though the other hospital had just checked my heart. As I sat there now, noticed I was not hooked up to any heart monitor, with no wires or holter monitor attached for telemetry monitoring. After my experience with them previously, I noticed this was the same cardiologist as the first visit. I freaked out, asked for a copy of an ECG or EKG - something showing proof of their claims. They said there is no time, my mother and sister were hysterical begging me to trust the doctor and get the surgery. Recalled days later that during our 15-minute conversation didn't lose consciousness once. Strange. Still, they insisted it was necessary or death would occur. I insisted that the pacemaker be MRI compliant, my family showing them the results of the spinal tap I had just picked up hours earlier. They promised it would be MRI compliant in front of me, mom and my sister: it was not MRI compliant as I learned after receiving facial reconstruction surgery. Immediately sent an email to HR citing the issue. Cardiologist, whose practice I later learned is owned by the same hospital group, stated that the leads and unit would be MRI compliant by the FDA within the year. If not, they would replace it at no cost, with an MRI compliant unit. Taped that conversation - with witnesses present.
Had to wait another year before an MRI could be taken
While recovering, I had another MS relapse and forgot about calling an attorney, figured I could do it at a later date as this was all occurring in a short time frame and was sure HR would now do something with a 2nd occurrence. Shortly thereafter my mom became ill and I had to become her caretaker along with my sister. No response from HR went unnoticed by me. I was referred to a neurologist, after surgery, who told me she was 100% certain I did not have MS, told me I did not have Parkinson's and to stop taking Parkinson's meds. Checked in with the maker of the pacemaker every few months to see if it was FDA approved for MRI use… Not yet. Three weeks prior to the end of the year, with spinal stimulator now removed, called the cardiologist to schedule replacement surgery, per his promise, as their unit was still not FDA approved for MRI use. Was told they’d call me back with a date. One week later I received a letter discharging me from their practice. Unreal... Contacted HR again, sent a letter to the board of directors, no answer. Had to have the pacemaker removed and replaced by another cardiologist at a different hospital. Reported all of this to insurance, made complaints via phone to state agencies, no replies. Had to wait a year to heal prior to any MRI being taken.
Hospitalized for a mental breakdown
When not relapsing, or caring for my mom, started to research the neurologist I was referred to. Found out her practice was also owned by the very hospital group that had committed all of these heinous acts against me. Lost my mind, had to be hospitalized for a mental breakdown. Checked into a private facility not owned by said hospital group, was drugged up and shock therapy was suggested by the lead physician – who turned out to be yet another employee of the same hospital group. Was transferred against my will back to the same hospital group for shock therapy. Then dosed with high doses of inappropriate meds to turn me into a zombie that made me sleep 18-20 hours a day.
A 1st-year med school student should have known it was MS
Eventually after about a year, weaned myself off of all meds. Got an MRI from a new neurologist who said even prior to looking at results of MRI - just from reading the spinal tap results, that my levels were so high on the spinal tap a 1st-year med school student should have known it was MS.
Another subterfuge tactic
It was at this point I realized that all actions taken after the first incident were part of a cover-up to keep me from learning the truth of my MS and holding them responsible. Contacted the hospital again with pictures of the original bloody injuries with a last chance to talk letter and email. Was contacted by a law firm representing them to communicate only with his firm. At this point was in the midst of another relapse and calling an attorney slipped my mind as our mom got closer to death. Later learned from a new cardiologist, who read the interrogation of my pacemaker performance/use that there is no way, based on the infrequent nature of it turning on to help me, that I even had sick sinus syndrome. Another subterfuge tactic.
I began to do research
Anyhow after my mom passed, I began to do research on the statute of limitations on medical malpractice and found there was a two-year time frame to bring the suit. However, tolling, statue of repose and the fact that these were not just medical malpractice incidents, yet a breach of fiduciary duty by HR and the Board of Directors, as well as human rights/civil rights violations – can go out 4 years, which I am still within, or can stretch out as far as 7 years for a well versed attorney in all of these other areas listed above to handle the case.
This hosptial group needs to be punished
Here's the issue… Every attorney I speak with will not listen long enough to the chain of events to see the systemic cover-up, fraud, and misrepresentation of facts to pursue it. This hospital group, who operates in 9 states needs to be punished so this does not happen to another human being ever again. With corporations, monetary punishment is one of the few things that affects change. This hospital group, which makes billions and billions of dollars per year, was fined by the state of Florida for 118 million dollars a few years back under the Carter laws. This law states they cannot buy or own practices or employ doctors on their payroll who are not doing their job, or are just serving as a referral source back to the hospital for income. What the state did not do was make sure of quality of care control of these hospital-owned practices and doctors.
Seeking a good law firm
Does anyone know of a good law firm versed in these issues? Or have contacts at news outlets or any other ideas on a way to bring this chain of events to a national news spotlight to attract the right law firm and expose this darkness to the light? Whatever may be recovered in compensatory and punitive damages, would gladly donate a large portion to MS advocacy and research to find a cure, not just a band-aid. Once this current relapse passes, will use this story as a platform to become an outspoken advocate for MS, until then - any help or direction to secure counsel or bring this story to a national stage would be greatly appreciated. Apologies for the length of this recounting of events, including the dark nature of the events, as my usual words are those of encouragement, the power of positive thoughts, smiling, being happy, taking action, planning, breathing, acceptance, courage. It took me a few years to get back to a place of positivity after these events, although having lived them without any justice - for just us. It adds to stress until light is shone upon the dark underbelly of a broken system and true reform/change occurs. Then we will truly be heard, understood, as well as no longer ignored regarding our own symptoms expressed to health professionals.
If you or a loved one are not being heard while advocating on your own behalf and because of your disease cannot speak louder, fight harder, insist more urgently – ask for help. So glad this community exists and that the next generation of MS wonderers are taken more seriously when presented to a doctor or hospital for care. Please feel free to share thoughts, your experiences in your own advocacy adventures - good or bad. At the very least, expressing is a cathartic exercise that lightens the load we all carry cumulatively together, as the 1/3 of 1% of the world living and loving with MS. Hoping your moment is great, that today is better than yesterday, or that tomorrow is better than today. All the best to you, to us...
How many specialists did you see before finding "The One"?