Many of you may not know, but I was diagnosed with Multiple Sclerosis in November of 2015. Shortly after my diagnosis, I wrote the following “story” about my diagnosis. We shared the the news with family and slowly we told friends and co-workers but it wasn’t ever something I publicly shared. Many of you may know about my MS Diagnosis, but never read this story – it’s long, but helps you understand my perspective and what got me through the first days/weeks/months to get to my “new normal”…
“Well – this is new,” the young man thought as he stepped out of bed to feel the sensation of pins and needles in both feet, as if he had been sitting on them all night. After finishing his morning routine, he realized that this new sensation was going to be around a while and then he set about his day. The weather was unseasonably warm for the weekend before Thanksgiving in Colorado which made it feel less like the holiday season and more like fall.
The weekend passed and the pins and needles persisted – causing moments of concern, but nothing mentally debilitating. The prior week the young man spent traveling – sitting for long periods on airplanes and lugging bags around…perhaps he had simply pinched a nerve in his back, or sat too long…surely his feet would wake up eventually.
As Monday approached a growing concern became too much to ignore and the young man reached out to his doctor for answers. Because it was a holiday week, the doctors were consumed with other more pressing cases and the earliest available appointment was on Tuesday. He made the best of the warmth and put up the Christmas lights outside so it would be done in time for the upcoming holidays.
During his appointment on Tuesday, some routine blood work was done as well as an A1C panel and Vitamin B12 to rule out Diabetic neuropathy and pernicious anemia. No specific diagnosis other than “Well – that’s strange,” was given.
Waiting for the test results was agonizing – wondering if his life was going to be drastically changed by insulin injections or by something different and equally sinister. Wednesday passed with no lab results. At this point, Google only provided more concern as he Googled symptoms and terrifying things were returned. As the pins and needles sensation seemed to be intensifying, he began to wonder if left undiagnosed or treated, would he wake up lacking the ability to use his legs at all?
Needing answers he set off to the ER – at 11 pm on Thanksgiving-Eve. It was lightly snowing, finally showing signs of Winter. Once at the hospital and checked in, it was only a matter of moments before the ER doctor had performed an initial physical exam and concluded that the young man wasn’t diabetic – as it would take years of other symptoms before neuropathy would start to show. He also concluded that the young man wasn’t anemic as he regularly ate meat. The ER doctor mentioned that he wasn’t inclined to think it was Multiple Sclerosis (MS), since in his mind MS presented in a more hemispheric pattern (i.e. you get a plaque in the right hemisphere of your brain and your left hand goes numb). The young man mentioned that his father-in-law contracted a case of optic neuritis that was left untreated for a week as he waited to get an appointment with a neuro-opthamologist (yup – that’s a real thing…and there aren’t many of them in Colorado) – which caused some permanent vision loss and also weighed heavy on his mind and initially spawned the thought of lower extremity paralysis.
The ER doctor offered two courses of action: go home and see if the pins and needles sensation goes away, or he could perform a lumbar puncture to see if there was anything in the cerebrospinal fluid (CSF) that would lead to a diagnosis. When the young man asked him his opinion, he replied with, “Well you came here, on Thanksgiving-Eve, because you felt like there was something wrong. I can help provide you answers today, but it will take the lumbar puncture to do so.” When the young man asked what his thoughts were, the ER doctor didn’t want to speculate too much, but Guillain Barre Syndrome (GBS) or Meningitis were things that the lumbar puncture could help rule out.
The young man agreed to the additional testing and it was started and finished in about 20 minutes time. Obviously, the lumbar puncture wasn’t “fun” – however the procedure is incredibly routine as it’s the same technique employed to deliver the epidural numbing agent used for laboring mothers. As the ER doctor was pulling the samples of CSF to send to the lab, he mentioned casually that he was going to pull an extra CSF sample to send off for MS testing, even though he didn’t think that MS was the culprit, since this is “precious stuff” and it’s not terribly easy to get.
1:00 AM in the ER on Thanksgiving day is quiet. The young man laid in the ER bed, gowned, and hooked up to a continuous blood pressure monitoring machine, trying to rest and failing – due to the ten 48” fluorescent bulbs that were lit in the hospital room and the unsettled feeling of the testing he just had done and concerned about more testing that could be coming. The young man texted his wife that he was doing well. She was at home with their two children and clearly not sleeping, as he continued to receive almost instantaneous text message replies. He felt like she was right there with him and was incredibly comforted by her emotional presence.
As some of the CSF and blood tests came back, they showed that there were signs of inflammation in the CSF, but were negative for GBS and Meningitis. The ER doctor indicated that after talking with their on-call Neurologist, they had ordered a head, neck and Thoracic Spine MRI – in part because of my lab results, and in part because of the Optic Neuritis in my family history. The young man said back to the ER doctor, “Family history…you heard me say Father-in-law, right?” The ER doctor said, “Oh…so no genetic tie?” and the young man replied, “Nope.” The neurologist had already ordered the MRI testing and they had already called in the on-call imaging specialist, so the ER doctor said, “Well, we might as well go on and do them, as it will provide the neurologist more information anyway.”
The MRI testing included the three sections of the young man’s head and spine and was ordered to be done with and without contrast. For the uninitiated, in addition to the 2’ diameter tube that you are slid into, a head and spinal MRI also includes the installation of a cage over the head and one on the chest to receive all of the radio frequency responses of the MRI – further adding to the claustrophobic nature of this test. The young man tried to remain calm and cool and rested in the knowledge that at least no one was sticking a large needle in his back. The MRI testing generates incredibly high resolution and clear images of the brain and spine…but it makes a significant amount of noise – so much so that earplugs are put into the patient’s ears to help keep the perceived noise level at a manageable level. The noises are somewhat other-worldly as well – pops, clangs, beeps and one particular scan that happened to be a resonant frequency in the bones of the young man that made him feel as if his soul was going to be pulled from his body. The entire MRI process took on the order of an hour in the tube for a complete set of images.
Back in the ER waiting for test results, the young man sat, again – trying to rest and remain calm. After the radiology report was generated, a new ER doctor presented the young man with results…in that they had no results. He said that nothing definitive was shown on his CSF panels, and nothing definitive showed up on the MRI. The young man was discharged and sent home at 5:00 AM on Thanksgiving morning with instructions to follow up with a Neurologist on Friday. The new ER doctor mentioned that they didn’t think he was crazy, but they couldn’t come up with a cause for his neuropathy.
The young man went home – with an intense headache, either from pulling an all-nighter, or from the delta in pressure in his CSF. Either way, he went to sleep for a few hours before his family arrived to have Thanksgiving brunch…after all, he was healthy, and had a Turkey to prepare.
After he woke up, had some breakfast and got the Turkey in the fryer, he told both sets of parents and his wife the whole story of the previous night’s activities. Trying to put the numbness in his feet out of his mind, he continued to help prepare the day’s meal and to enjoy the company of his kids and family.
Around 1:00 PM, just before the family was to sit down to their traditional Thanksgiving meal, which this year was to be done as a late lunch, the young man received a phone call from the Chief of Neurology at the hospital. She asked if the young man had received any results from the night before. He indicated that he was discharged with “inconclusive” results. She apologized for the confusion, and made no excuses for the mistake, but that there was in fact a result that was buried in the radiologist’s report, which was noticed by the Physician’s Assistant (PA) who picked up the case on Thursday morning.
The radiologists report indicated that there were brain plaques and a spinal plaque that indicated MS and that was her diagnosis as well – coupled with the clinical presentation of symptoms. She was very encouraging over the phone, and indicated that the young man didn’t need to come back into the hospital today, rather he should stay home with his family, eat a Thanksgiving meal and enjoy the fact that his prognosis was excellent. She also indicated that the plaque that was causing his current symptoms was located somewhere near the conus medullaris, which is at the very end of the spinal cord, and when a plaque is in the spinal cord, the symptoms present bilaterally and from the plaque down. The ER doctor that didn’t think it presented like MS was thinking “MS is a brain disease” rather than “MS is a CSF disease”, which can affect both the brain and the spinal cord.
She made an appointment at her clinic for the young man the next afternoon, so the young man and his wife could discuss treatment options and go over all of the radiology images and ask any questions they might have. During this appointment, three treatment options were given to the young man, of which he chose the one with the least listed side effects. He also modified his diet to remove refined sugar and grain from his diet in an effort to reduce the inflammation in his body. The Neurologist also ordered 5 days of high dose IV infused steroids – specially modified to pass through the blood-brain barrier (BBB). This would help decrease the swelling that is happening in the affected region of his spine, and allow the remyelination process to proceed and fully restoring his neurological function (i.e. effectively “waking up” his numb feet). The Neurologist remarked that she so rarely has all of this information available to her in such short order to make a diagnosis like this. She was amazed that I already had CSF labs that supported her diagnosis of MS, and had the images to confirm it.
The young man had presented with a Clinically Isolated Syndrome (CIS) of Relapsing-Remitting(RR) MS. Technically, MS requires two clinical presentations of symptoms to be considered Clinically Definite (CD) MS, but after a single presentation of symptoms combined with the additional testing that was done at the hospital, there was enough to make the diagnosis and begin treatment. RRMS is the most common form of MS, and can be well managed using modern pharmacological techniques, with varying delivery options which include simply swallowing a pill, to subcutaneous injections all the way to monthly IV infusions.
Incidentally, the day after Thanksgiving, the young man’s regular doctor called and informed him that his A1C came back and that he was on the border of being pre-diabetic and that he should try to cut back on his sugar intake. Because of the relapsing/remitting nature of his MS, he could have heeded the advice of his primary doctor and cut back on sugar, his symptoms would have gone away, as they would have done naturally, and the young man could have gone a year or more before having another relapse, and would have remained undiagnosed.
Looking back at the symptoms and diagnosis of this young man’s recent journey, one can glean some pretty remarkable instances where God’s hand was clearly directing every detail:
- The continued fear that pushed him to the hospital to begin with – which led to the correct diagnosis. This concern in his mind would have been allayed if he received the test results from his primary doctor on Wednesday, when they were supposed to originally have been done. Because he didn’t receive those results, he went to the hospital.
- The ER doctor pulled the extra sample and sent it off for specific MS CSF testing, even though he didn’t think that the symptoms presented in such a way that it could be MS.
- The ER doctor heard “father” instead of “father-in-law” and conveyed that information to the Neurologist on call who ordered the MRIs. When the young man pointed it out to the ER doctor, he almost flippantly said, “Well, they’re already ordered, so you might as well go on and have them done.” As it turns out, those images, coupled with the clinical presentation and the CSF labs allowed the Neurologist to make the proper diagnosis.
- The PA who was closing out the young man’s chart the next morning who caught that the radiology report had the diagnosis of MS in it – and realized that no one had told the young man before being discharged took it upon herself to contact the Neurologist on call, who also happened to be the Chief of Neurology, at the hospital to let her know. Without her noticing that rather important detail, the young man may have gone many years and relapses before having any knowledge of his diagnosis.
- The doctors missed the MS notation in the radiology report and allowed me to go home – to receive the news of this diagnosis in the young man’s home, with his loving family and support system by his side to cry and pray with. He felt incredibly blessed to be able to receive this diagnosis while standing with his family, and tried to express that gratitude to his Neurologist, who debated whether or not to call the young man on Thanksgiving and give him this diagnosis over the phone and settled on making the phone call.
Making any assessments on whether the young man was “alright” had to come after the IV infusions ended and the oral “tapering” pack were completed, as the steroids affected the young man mentally, emotionally, and physically. Everything from food tasting like zinc to night sweats to the feeling that his soul was hopping up and down in his brain coupled with the IV that was left in his arm for 5 days and daily trips to the hospital infusion center gave him the overwhelming sensation of being “sick”. Daily episodes of uncontrollable weeping ensued as a result of all of the changes that had happened and were implied over the previous week. Whether because of the steroids, stress, or the change in diet, the young man lost 15 pounds in the two weeks since the symptoms began.
After the young man was allowed to get off the emotional roller coaster that the steroids put him on, he began to come to grips with his new reality.
He is not in charge.
As many times as he’s told his kids that THEY were not in charge, he kind of always assumed that he was. He was (and still is) a successful engineer, making his way up the corporate ladder at his company, blessed with an incredibly beautiful wife, two amazing children, a home two times as large as what he “needs” (by comfortable United States living standards), a new car, and anything else he decided he wanted. I mean, life’s not perfect, but if you asked him, he couldn’t identify anything particularly “wrong” with it.
At church on Sunday, the pastor referenced a short story by Leo Tolstoy – yes, the same one that wrote another short story called “War and Peace”. This short story is entitled “What Men Live By”. So as not to butcher this beautiful work of literary genius by distilling something already called a “short story”, I’ll simply sum up the three main points that really hit the young man as he read this story.
In the story, three questions must be answered:
- What dwells in man
- What is not given to man
- What men live by
The answers, as it is presented in the story, that LOVE dwells in man – the kindness and generosity of others in time of need – the aid to all mankind. KNOWLEDGE OF WHAT WE NEED is not given to man – the things we WANT is not necessarily what we NEED. This is illustrated in the story by a wealthy man who has a pair of boots commissioned to be made that should last him a year’s worth of use as he purchased fine and high quality leather, when that very day he is struck dead and instead needs burial slippers. The realization that I cannot provision for my future because I don’t know what my future holds. The idea that men live by the LOVE OF GOD and not by care of themselves is deeply comforting for the young man in this diagnosis – that he can’t possibly know what his future brings and that is OK…because he has the love and provision of an all-knowing God.
This diagnosis instantly took him from the driver’s seat in his own life and redefined him squarely as a passenger. Hubris was the thing that made him think he was ever really driving to begin with…
That was over a year ago! I can’t believe how far I have come! I give myself shots three times a week (an MS medicine called Copaxone) and although they are not comfortable, I do it because I know it will give me a longer future without symptoms. We participated in the MS Walk and MS Muck Fest this year and will continue supporting the fight against MS. I started eating Paleo and working out to take care of myself (more on that in the next blog post by Lori) and am in better shape that I have ever been! I tell people this a lot, and I don’t say it lightly, but MS is the best thing that has ever happened to me!