As the winter loses its harshness on this second day of March, so have I. Seems that I am letting go of a few things inside and out as a change of season has landed on our doorstep . . .
Our trip to Mayo Clinic ended with a focus much different than the one we had when we arrived. Briefly, the expert neurologist informed us that my labs that I had painstakingly collated from home were “garbage,” that my problems appeared to be psychiatric, and that further testing would be a waste of money: we see 150,000 people a year in the Autoimmunity Clinic. You don’t have it! A second neurologist expert used more functional terms yet still claimed that “even a 3rd year medical student knows the difference” in the various differential diagnoses. So we (my healthcare providers to date + myself) are idiots? So it seemed as we entered the weekend in Rochester, Minnesota . . .
Six days after that first appointment, the shock of what they were telling us had worn off. The exhaustion and soreness from extensive lab testing, EEG, lumbar puncture, and 5 additional consultations gave way to a new direction in my ongoing recovery from a serious illness. It was a tough mental journey while literally trapped on Sunday in a Minnesota blizzard but I did get there. First, on Monday an Endocrinologist determined that I was on too much thyroid medication and it could be contributing to my symptoms. Holy cow! The new medication was ordered that afternoon and sent on its way to our home address. Days later, the adjustment process is both rocky and underway.
Second, the physical rehabilitation department has a special program for what they term a “Functional Movement Disorder.” The physical and occupational therapists retrain the brain using specific balance, breathing, and movement techniques within the context of stimuli for me that trigger my convulsive episodes. Interesting. A trial run of this approach was horrific! In retrospect however, I recalled an evaluation in a local Balance Center 2 years ago and treatment that was recommended for a “Mild Vestibular Disorder;” it was also horrible and I couldn’t do it in tandem with other treatments my Doctor recommended at the time. The Mayo Clinic staff say that their approach is different so I decided to begin their PT and OT home programs regardless. What if it helps? In 3 days since then the convulsive episodes have not yet changed but my balance is improving! Yay!
I don’t have an autoimmune disease as defined by the Mayo Clinic. My labs are also negative for various infections and inflammation, glucose and other markers for which my blood and cerebral spinal fluid were tested. But some other labs are waaaaaaaay off and those are the ones in focus right now. If I can progress in my home exercise program, and I suspect that I will do so quickly, I have the option to return to Mayo Clinic for a 5-day intensive Functional Movement Disorders Program. Perhaps within a couple of weeks I will know if this Program will be effective for me: if the techniques begin to change any aspect of the episodes then, Lord willing, I hope to return to the Mayo Clinic. By then my thyroid status should be moving in a better direction as well. It’s all good I guess.
Funny how enduring very early morning appointments under duress in a strange place with 1-2 hours of sleep painted a much different picture of me to these clinicians than what I am presenting now! Tonight I still feel depleted yet my stress level has gone down significantly. All of the laundry and unpacking is done along with the myriad of things you have to do after returning from a 9-day medical trip. (Our trip to Mayo Clinic was extended twice to complete all of the consultations recommended and requested.) The expenses were immense and we haven’t even seen the medical bills yet! (Did I mention that the water heater needed replacing 3 days later? Ugh.) Still I am stabilizing and in a better place than when I was struggling to just breathe 2 weeks ago.
The seasons are about to change and the gears of treatment planning for me are moving forward as well. Gentle Reader, you know my mantra will remain that Lord willing, I am going to get well! And to Him be the glory! I am grateful that Steve and I got to go to the Mayo Clinic and learn so much on so many different levels. What other levels you ask? Well that will be a bit o’ prose for another day of course. Until then Godspeed my friends, JJ
Like many times before in January these past 7 years, I am seeking a new direction for my medical care as a serious illness continues. A recent autoimmune blood test found antibodies for a particular type of central nervous system disease. So of course we are off now pursuing the next big thing! Here’s an initial brain dump on the subject (absolutely no pun intended!).
Autoimmune disease (AD) is a disease in which the body’s immune system attacks healthy cells. There are up to 100 different types of AD (depending upon which resource you use) and 3 triggers that I can discern that initiate the onset of symptoms:
Gene expression that gets turned on. This is where your have genetic markers for a particular condition coming from somewhere in your family tree that starts to express itself as active disease when triggered by stress, infection, toxicity, or some traumatic event.
Infection by bacteria, fungus, or viral agents. This appears to apply when the infection is severe or chronic.
Cancer. This may be a chicken-or-egg type of dynamic where a patient may never know what came first.
Docs have diagnosed me with a few conditions in the past that may be considered autoimmune disease. But it wasn’t until my Doc finally decided to start testing me for AD antibodies (Cyrex Array #7) that something concrete was identified and it is serious. The condition mimics a neurological disease that my Father had. The biotoxin illness that triggered my 7 years of chronic illness (beginning the same year in which he passed away, interestingly) and subsequent infections may also contribute to my situation. Thankfully, no cancer has been identified so we will stick with the first 2 triggers as entering me into the AD phase of my long term treatment plan.
So I started researching as usual and discovered two primary approaches to neurological disease in general: 1) manage the symptoms of a debilitating, degenerating course, or 2) treat it with immunotherapy and medications that have the potential to reverse its course when there is an AD component. My Doc suggested continuing various supplements and physical therapy. A second Functional Medicine Doc suggested a “functional medicine chiropractor” and a neurologist who specializes in Parkinson’s Disease. Of course I will consider these but I am also not going to wait around while my body deteriorates without seeking something more substantial! Fortunately it appears that for me, there may be medical treatment options including what is called IVIg that have the potential to REVERSE THE EPISODES THAT APPEAR SEIZURE-LIKE, VIRTUALLY EVERY DAY FOR NEARLY 7 YEARS! Yes, let’s do that!
Yesterday I set up an account and submitted a brief case history for review by the Autoimmune Clinic at the Mayo Clinic in Rochester, Minnesota. Their neurologists specialize in neuroimmunology, participate in the latest research, and are willing to initiate trials of immunotherapies and medications to help their patients. I had contacted a couple of researchers directly, consulted the leader of a regional support group, watched lectures and interviews, and reviewed the literature on the factors relevant to my case. “Time is brain” and “time is cerebellum” appeared several times in the studies, suggesting not waiting around for something to happen. Overall, this field of study is very complex; I believe that I understand the main principles enough to share with my beloved Stevers and, as one accord, proceed in this new direction in my medical care.
As with anything new and complicated, there are many unknowns ahead of us. Will the neurologists accept my case and when will I be able to schedule my consultation, testing, treatment? How much, if any, will my insurance cover? How will I tolerate a lumbar puncture procedure likely needed for comprehensive diagnostic work-up even if administered under anesthesia? Will we be able to pay for the travel and out-of-pocket expenses that, for immunotherapy, could exceed tens of thousands of dollars? Can any of the treatment, if indicated, be completed locally and how many times will I need to return to Mayo Clinic (a full day of driving away from home)? In the winter when it’s too cold to camp, will I be able to tolerate staying in a hotel often laden with fragrances that trigger convulsive episodes? Will our aging and endearing pup Elle be able to travel and stay with us?
You know we are praying about all of these questions already! I am a bit frightened by the diagnosis I have been given, having worked with persons with movement disorders during my career as an Occupational Therapist. Yet I am also in awe that this information came NOW and not 3 years ago when I first considered a consultation at Mayo Clinic. We have learned so much since then, ruled out other conditions that don’t apply to me, treated conditions that put me in a better position to benefit from an Autoimmune Clinic, confirmed that this illness is not psychiatric, and know the process of travelling for medical care (as in my craniomandibular specialist whose care continues).
I feel like the expression on Elle’s face in this picture. Three paws in view and one paw under the rug with the unknowns lurking underneath there as well. Will there be Rubber Duckies or sweetness from the Lord to lighten this journey? Surely. Each phase of this time in my life has brought blessing with the hardships. Besides, you know I love road trips with Steve! And Elle!
Hang tight Gentle Reader. We may be headed north really soon! JJ
That’s me with my brother’s girlfriend catching a ride on a Saturday night as I waved to my husband from the Monster Truck ride at the Maximum Destruction show. Although I had never ridden in a jacked-up truck before, the figure-8 track of an auto raceway not far from the Motor City is nothing new for me. I grew up hollering and hooting during demolishion derbies on hot summer weekends in the Detroit area where I grew up. Virtually everyone in my family worked in the auto industry, the men in my family all tinkered with their cars, and my Dad founded a company that produced the fastest slot car motors on the tracks in the 1960’s. It seems so long ago yet the adrenaline is so easy to tap into when I hear those engines get revved up!
The racing was exciting! The effect it had on me was not-so-much exciting as it jittered my fragile nerves. We did make it all the way through to the trailer races on the figure-8 track at the end of the night: battered vehicles of all types pulling various types of 2-wheeled trailers for about 10 laps around the track. The smash-ups drew roars from the crowd and the buggy towing the large teddy bear in a row boat took home the trophy that night. I was exhausted as my own River Bear drove us home into the wee hours of the morning back across the State lines to Indiana. What a crazy night!
I am not sure if it was all of the smoke that seeped through my charcoal mask, the vibration of the roaring engines, sitting on those damp wooden bleacher seats, or what exactly affected me the most on Sunday. I sure slept a lot! Certainly any of it would have kept me home just 1 year ago. I am doing better in many ways. But today brought another bad convulsive episode that seems to be happening again about every other day now. We are puzzled; I am discouraged. The healing from the specialized dental appliances and upper cervical chiropractic care appeared to be helping to decrease my reactivity, normalize my sleep/wake cycle, increase my activity level, and overall decrease the episodes. There were at least 2 days per week when I had no seizure attacks at all! And now they are back.
The only possibility we can think of right now, after nearly 7 years of serious illness and more medical care than you can imagine is a hidden issue in my cervical spine. Cervical vascular disease can give rise to traditional seizures but more in the acute phase of these issues than in a chronic phase. When neck extension can trigger them and the episodes can include a near paralysis of one side of my body then I start to think there is more going on than some pinched cranial nerves. Have the dental appliances reduced my symptoms 80%? Yes, until now, they have yet I still deal with the remaining 20% every day. Chiropractic adjustments and physical therapy have both triggered and resolved an onset of episodes.
My medical doctor took some convincing then ordered the first of a couple of diagnostic tests after realizing that I have a family history of carotid artery and heart disease. I was at the race this weekend with my brother who had a devastating stroke 4 years ago due to occlusion of his carotid arteries. For me, initial testing shows that my carotid artery is fine; it is the vertebral artery that could be most suspect as it travels around the first cervical vertebrae called the atlas. More testing should clarify what is going on. I often have instability or rotation at the level of C1. It doesn’t move correctly during flexion or extension according to specialized cervical xrays. We have got to figure out what is going in these structures in my neck!
Today and some other days recently, Steve providing simple distraction technique of my neck eventually resolved my worst symptoms during a bad episode. Extreme fatigue follows with an emotional release of frustration, despondency, exasperation, grief, and sorrow. This has just been going on for so very long! I am amazed that all of the massively destructive movement patterns occurring thousands of times day after day for years has not caused more damage to my weary frame. This finding actually gives me hope — that if the episodes stop then maybe I can regain some physical health and fitness with with what is left of me, with the body my Lord has entrusted to my care. Even those beat-up sedans, pick-up trucks, and other stock cars on the race track somehow keep going to win races week after week. Just tune ’em up, sure-up the quarter panels-n-bumpers, and onto the track they line up to race another day.
Perhaps that will be me at some level too in my race called “life.” Only I think I’ll add a little more bling to my frame than the lipstick ladies did to their jalopies during the first heat this past Saturday night. I might even spruce up the “paint job” on my hair color too. Next weekend (or hopefully one day soon) just might be my night to shine when the official waves the green flag to get up and go. Surely that will be a prize worth waiting for . . . just short of the ultimate finish line in heaven. Yes my Lord, I’m ready!