National MS Awareness Month || Fear of Hypochondria

There's a little worm that nestles into the back of your brain when you're faced with a potential diagnosis of MS or other autoimmune disorder. The worm's name is:

HYPOCHONDRIA

When I saw my doc about a year ago and asked him to take a look at these seemingly unrelated symptoms, which I felt embarrassed to even share, I told him: "I'm hoping you'll come back with a diagnosis of Hypochondria." 

chuckle chuckle... wink wink.. nudge nudge... 

But he took me seriously, bless his heart. I'm not one who steps into the clinic more than once a year for my annual exams and, maybe, a flu shot. He knew that I was there because SOMETHING WAS WRONG that I couldn't put my finger on. 

He'd had a recent encounter with that same experience himself, so I suppose that's part of the reason why he was so supportive and sensitive. After NOT BEING HIMSELF for a few months, he took matters into his own hands, found out he had cancer, ended up in brain surgery, and is now, almost 4 years later, back to himself. Probably an even better version of himself. 

So he knows what it feels like to have random symptoms that, by themselves, don't seem to amount to anything. But when they cluster together and simple daily things like, heck, going to the bathroom, are suddenly not going the way they've been going your whole life, ya gotta wonder...

I found out recently that my husband thought I was a hypochondriac before my diagnosis. Maybe for a while now. Part of me was like: yep. Of course he did, I had all these bizarre things going on with no simple explanation. This is why, in fact, many of us MSers are so freakin' relieved when we get a diagnosis... it means we aren't hypochondriacs, it's not in our heads (though, well, yes, it is! LOL), and there's objective scientific data in multiple testing that show the presence of a real disease.

But part of me was hurt to know this, though I always sensed his skepticism. How could he think I was imagining this? It makes me wonder if he thinks I'm some sort of psycho wingnut. Seriously.

And part of me was grateful that, until now, he'd not said anything about this. Not out loud. That would have been awful.

So many of my MS peers are faced with accusations that they are hypochondriacs, not only from their spouses and children and parents and other loved ones, but from their employers, EVEN THEIR DOCTORS in the face of objective data showing otherwise. 

No wonder people wait to get a diagnosis when the symptoms aren't alarmingly obvious like, say, a giant festering skin cancer or a heart attack. 

I waited. Yep. I was having parasthesias sweeping across my legs about 12 years ago. I was also experiencing leg tremors at about the same time, and endless bouts of fatigue. I totally remember this and thinking, Oh crap, I must be getting Parkinson's or something. But I *didn't* go to the doctor because, guess what? In my mind, I'm also thinking, Parkinson's is an old person's disease. I'm still in my 30s. If I go to see the doctor, my family, my husband, my doctor will all THINK I'M A HYPOCHONDRIAC.

So I waited a dozen years, which probably just progressed my disease state without treatment, silently, until about a year ago. If I *had* gone in, I would have probably been diagnosed and treated.

But I didn't. 

[WARNING: RANT ENCLOSED. You know what? This is not a problem for me, caused by me. This is a problem that comes from within our society. We need to stop being so mean and judgmental and dispassionate about each other. Yeah, Society. I'm lookin' at you. When y'all are out passing judgment on others for no good reason whatsoever, you contribute to this fear that keeps people from truly doing the right thing. Society, you want to do the right thing? Be compassionate, for crying out loud. And stop making people feel afraid to do the right thing! RANT OVER.]

It's not altogether useful to go into this IF ONLY practice (IF ONLY I had seen the doctor 12 years ago, as a for instance), because you can't move forward while living in the past and thinking about what you coulda-shoulda. That's not productive and can only make you angry or depressed. No point in going there. But if you or a loved one are putting off going to the doctor because of a range of unusual and seemingly unrelated symptoms because you are AFRAID TO BE DIAGNOSED AS A HYPOCHONDRIAC, you would be in good company. 

Nobody thinks random jaw pain will lead to a potential heart attack, but this is, in fact, what happened to a loved one of mine who, thank goodness, went to the doctor anyway and ended up in the hospital with a triple bypass that likely saved his young life. 

Let's face it, you would be grateful for any diagnosis wherein the outcome is LIVING. You can treat, heal from and cure hypochondria. MS? An acute heart attack? Notsomuch.

Here are some links to others' stories who've dealt with the fear of being labeled a hypochondriac. All of their stories resonate with me and point to a greater need for health literacy in our society as well as more self-empowerment and overall compassion. We can't win the fight against any disease if we let fear take the reins or if we don't acknowledge real disease in the first place.

1. People With MS Can Face Skepticism

2. :-/ Plagued by the Fear of Hypochondria

3. "Hypochondriac": The Most Painful Word In Pre-Diagnosed Primary Immune and Other Rare Diseases
4. JUST FOR GRINS: It's really difficult to get an MS diagnosis for some people. Read This Story. My DX only took a few weeks and one team. But apparently my story is unusual; the women in the story at the link seems to have a story more akin to the reality of diagnosing MS. You're going to be appalled, just sayin'.

PS My husband doesn't know this blog exists. In case you were wondering. 

National MS Awareness Month || The Great Masquerade That is Multiple Sclerosis

Multiple Sclerosis is a tricky disease to identify as many other disease tend to "mimic" its symptoms, making it difficult to get an accurate diagnosis and often meaning that some will be misdiagnosed with Multiple Sclerosis when they might, in fact, have another disease. This holds true for the reverse, as well.

If you know anyone who has been ill for a while and suspects they might have Multiple Sclerosis, you can take a look at what's involved in achieving a clarifying and conclusive, accurate diagnosis before deciding that maybe it's "all in their head" or they are a hypochondriac. (I definitely believed I was a hypochondriac until my primary care physician confirmed otherwise. Still wish I was just a hypochondriac, truth be told.)

It takes a lot of inquiry and testing to just simply identify Multiple Sclerosis among all these other impostors. I know people who have spent years trying to trace the source of their chronic illness, and still others who self-diagnosed because they did not have access to knowledgeable doctors who took their symptoms seriously enough to investigate this deeply.

The best way to achieve a differential diagnosis of Multiple Sclerosis is to rule out all of these other conditions, and that requires a host of diagnostic tools, which can include multiple MRIs, lumbar puncture, blood tests, neurological assessments, orthopedic examinations, cognitive function tests, nerve conduction studies, visual evoked potential tests, physical exams, and a detailed record of family and personal medical history.

The following are the most prevailing MS mimics, though this list is by no means exhaustive.

Autoimmune Conditions:

·        Encephalomyelitis

·        Lupus (SLE)

·        Sjogren's Syndrome

·        Myasthenia Gravis

·        Sarcoidosis

·        Whipple's Disease

Infectious Diseases:

·       Lyme Disease

·        Human T-cell lymphotrophic virus-1

·        Neurosyphilis

Vascular Diseases:

·        Stroke

·        Central Nervous System Angitis

·        Dural Arteriovenous Fistulas

·        Binswanger's

·        Moyamoya

Other Diseases and Conditions:

·        Fibromyalgia

·        Vitamin B12 deficiency

·        Muscular Dystrophy

·        ALS (Lou Gehrig's disease)

·        Migraine

·        Hypo-thyroidism

·        Hypertension

·        Beçhets

·        Arnold-Chiari deformity

·        Mitochondrial Disorder

·        Familial Spastic Paraparesis

·        Chronic Fatigue Syndrome

·        Degenerative spine disease

·        Brain and spinal cord tumor

The following list describes diseases very much related to MS (cousins, if you will) but which also require a differential diagnosis so the patient can receive the most appropriate treatment:

·        Optic Neuritis

·        Transverse Myelitis

·        Devic's disease or neuromyelitis optica

·        Foix-Alajouanine syndrome

·        Partial cord syndrome

·        Acute disseminated encephalomyelitis (ADEM)

·        Acute haemorrhagic encephalomyelitis

If you have a loved on in your life who has embarked on this journey, please support them. It is incredibly difficult to live a normal life while living inside these mysteries AND experiencing these symptoms.

Here's a fantastic article on differentiating MS from other medical conditions, if you're inclined to learn more.

National MS Awareness Month || Welcome to MS: Here's a map, but don't expect to know where you're headed

Here's an interesting graphic I found which shows how progression (from the left) can potentially lead to the ultimate disabling symptom of MS: death.

It's a complicated map for sure, of what could be waiting for anyone with MS. Aye, there's the rub, the words "could be." You see, there's no certainty that the progression diagrammed here will lead anyone to that fatal end game on the right, nor is there any certainty that they won't. All of us MSers are doing everything we can imagine or accept to halt the progression of this disease, but just take a look at all the side trips we may or may not have to endure along the way. This is part of the madness that comes of having MS, the not knowing from one day to the next how we're going to wake up. Functional? Foggy? Falling down? How far can any of us plan in advance? Or maybe the question really should be, how gifted must we be in graciously backing out of commitments and obligations? Because of all the other things that are uncertain, there's one thing for sure: all the best laid plans o' mice and men are not going to matter one iota if we wake up one day unable to move, to see or to think.

I consider myself fortunate, somewhere stuck in transit between the minimal and moderate impairment tracks, as I have tremor, bowel, fatigue and cognition issues, but mostly I'm focused on managing my symptoms at work, refining relationships with those in my support systems, and working with my DMTs to prevent future relapses. It's pretty much all I can do to keep up with my roles as mother, wife, daughter and employee while trying to outlast the war inside my body. Still, I'm nowhere close to the right side of the MS subway map. Now there's a bright side!

National MS Awareness Month || The Curious Incident of an MS Diagnosis

I've not yet told the story of my journey into the world of MS. Hang on. This is gonna take some time. And I'm only talking about developments over the last five years! But by writing this I hope to help others understand the challenges involved in just getting an accurate diagnosis of this chronic incurable autoimmune disease. So hang tight and thanks for your patience as I detail the crooked path that brought me to today.

In 2009, I faceplanted, sound asleep, onto the keyboard of my laptop for no good reason. Right in the middle of a very active teleconference with one of my editing clients, in fact.

How does this happen? I was sleeping eight good hours a night, waking up exhausted, and moving about like a zombie through my day. Working in a sedentary profession as a coach, editor and writer didn't help matters. I began to need naps almost every day and even found myself wanting to crawl onto a park bench during the middle of what was supposed to be a brisk walk because the drive to sleep had become nearly irresistible.

Sound familiar? It is if you're the working mom of two active children. No one, I REPEAT, no one thinks that that kind of exhaustion actually has a physiological explanation outside of being overbusy and underslept. This is the price I pay for being a working mom, right? The price of feminism?

So I ignored the signs, didn't think anything about them until I started having headaches and woke up daily with a sore, dry throat. I'd never had headaches previously, and my husband was complaining that my snoring had become ridiculous.

I talked to my doctor about my excessive daytime sleepiness, and he gave me a pulse oximeter to take home. It's a little device like a clothespin which you place on your finger when you go to bed. It measures the amount of oxygen saturating your blood in increments all night; it automatically stores that data on a chip. The doctor then downloads that data and looks to see if your blood oxygen ever dropped below what is consider the normal range during the night. If it does, it might signify a number of things, including the presence of obstructive sleep apnea (OSA) or upper airway resistance syndrome (UARS).

If you don't treat either problem, you run the risk of suffering from elevated blood pressure; aggravating a preexisting (or pre-emergent) chronic health condition like heart disease, stroke, depression or diabetes; or enduring an endless fatigue that makes it difficult to manage the usual and sundry tasks of everyday living like housework or grocery shopping, potentially leading to an unfortunate path to obesity over time.

Also, problems with either condition, if left untreated, could lead to a slow whittling away at your ability to think clearly, make sound decisions or articulate yourself.

Great, just great. 

My nocturnal oxygen reading showed some evidence of oxygen desaturation while I slept, so I was sent to a sleep lab to take two tests. The first was an overnight split-night polysomnogram to rule in (or rule out) OSA. If you have obstructive sleep apnea, you are likely waking up all night without realizing it because your body is trying to get oxygen into your bloodstream even as your upper airway is collapsing in periods of 10 to 30 seconds (or even longer). Your sympathetic nervous system kicks in, you sleep a more shallow sleep, and your body works overtime during what should be a period of rest to regain lost oxygen.

My second assessment was a series of short daytime naps called the Multiple Sleep Latency Test, which is used to differentiate excessive daytime somnolence as either the result of narcolepsy or idiopathic

Distinctive EOG waves during REM sleep

hypersomnia (or neither). If you fall asleep within a short nap period AND experience REM sleep, and this happens more than half the time, you're a candidate for narcolepsy. If you fall asleep within a short nap period but DON'T experience REM sleep and it only happens less than half the time, you're a candidate for idiopathic hypersomnia. In either case, there's not a lot you can do to fix the problem as researchers are still trying to figure out the mechanisms that lead to this failure of the brain to regulate both your sleep and wake drives.

So if you are lucky and don't pass the MSLT, it's "diagnose, and adios." More or less.

I use this phrase here for a reason. When MS was first being widely diagnosed, that is pretty much what happened to patients... they were given their diagnosis and that was it. Fortunately, the National Multiple Sclerosis Society has this to say on that matter in 2014:

At any rate, this was back in the days before interferons were discovered to have immunomodulating properties that could help halt the progression of MS. Relating to my initial point about excessive sleepiness... an MS diagnosis back then is similar in many ways to a narcolepsy or IH diagnosis now... not a lot of options available. A couple of drugs, little research funding, and rare frequency in the population. You're on your own.

Malampatti Scores show
the wide range of airway
shapes and capacities,
from wide and accessible
to narrow and crowded

But I digress. When I got my results from the sleep clinic, I wasn't surprised. I didn't have obstructive sleep apnea, but UARS, which is a kind of precursor to OSA. It's caused by, among other things, having narrow airways as well as retrognathia (a soft chin and overbite) and it's aggravated by both my preexisting and worsening gastroesophageal reflux disease (GERD) and the postnasal drip caused by my allergies (which are all related to toxins, chemicals, pollutants, perfumes, etc.--that is to say, nothing natural like pollen, so there are no shots I can take for relief).

The results for the MSLT were inconclusive, however; I had some unusual arousal patterns and alpha intrusions that might have been the product of some medications I was taking (and continue to take) for a separate health condition. We resolved to treat the UARS with an oral appliance, which mechanically moves forward the bottom jaw and thereby opens up the back of my upper airway enough so that I can breathe freely without snoring. It helped a bit: I stopped snoring, the headaches and sore throat went away, and my postnasal drip became more or a less a thing of the past now that I had the physical assistance to naturally clear my own airways as a result of using the appliance.

But I was still tired. A lot.

Fast forward to the end of 2010. I decided to close up shop working independently as an editor/coach and focus on my own writing and more time with my family. I was still tired and, even with exercise and diet, my energy levels were stuck at a plateau of about 60 percent of what they used to be. Was this what it felt like to be 45? Were people really this tired at middle age? I couldn't accept that and felt that something wasn't right even if I couldn't put my finger on it.


I decided I just needed to make a big change. A career change. Away from sedentary, quiet work that demanded a lot of emotional and intellectual effort, which seemed to suck the life out of me. I wanted to move toward more active work in which I engaged with others live and in person. Work that made me feel like I was making a meaningful difference. Work that employed what I suspected was still a top-notch intellect beneath all the fog I had accumulated.

Two years later I was back in school, pursuing a credential in sleep technology as an RPSGT: Registered Polysomnographic Technologist. All the personal interest and time I'd invested in learning about sleep inspired me to go into this line of work because I knew first hand that there wasn't enough good writing out there about sleep disorders. Or, the information that was out there either exoticized the more rare kinds of disorders (like REM Behavior Disorder) or cloaked disorders of sleep in too much medicalese. I saw a niche for myself in writing content about sleep health for ordinary consumers and decided this would be the perfect career change for me: it meant I could help people, interact actively and in person with others, and combine my new sets of technical skills with my established set of communications skills.

I would fast forward to late fall of 2012, but for me it was more of a slog. Thirty hours of homework a week, and I was wiped out beyond capacity. On top of that, I began to have problems with my handwriting (I'm old school, I still handwrite my notes), with memory, with learning, with numbness in my writing hand (to the point I couldn't pick up a cup of coffee) and the fatigue was utterly off the hook. Not enough coffee in the world, my friends. Not enough.

On top of that, there were stressful things happening on the home front with both my parents and my husband's mother (physical and mental health issues). And then, a week after I'd completed my first fast-walk 10k (a time when I was probably in the best physical shape I've been in a good long while), I discovered (and, thankfully, treated) a sudden major increase in my blood pressure, going from 120/70 to 190/110 at one point.


Not long after, I began to get "chilly willies," a kind of sweeping, tingling sensation that swirls across the
muscle fibers of one's body. These were mostly located in one or two spots, and I had had them before, but didn't think anything of them until they began to happen all the time and over new places they'd not affected me before. And my left leg began to tremor when I stood. This was something else I noticed years ago, but just ignored. As an isolated symptom, it came and went and didn't ultimately impact my daily life. At one point it stopped entirely, but by February of 2013, it was back with a vengeance with the chilly willies.

At that time, I also began to notice issues with speech (word recall and pronunciation) which began to make me worry. I'm a writer who has done a lot of live, and often impromptu, readings of both fiction and poetry; I have also lectured and make presentations before groups, taught classes and led seminars. Was I having a stroke? Was it Parkinson's Disease? What? What? What?

Spring break came at the end of March 2013, following finals and my participation in a regional sleep technology conference which, it should come as no surprise, I kept falling asleep at during sessions even while plying myself with cup after cup of coffee.

I went to the doctor; he did a variety of assessments and asked me a boatload of questions. He's an amazing doctor. If everyone had my doctor, we would all be so much better off! Then he promptly scheduled an MRI for me the following day.

I was nervous and decided after that 45-minute trip into the White Tube of Death that afternoon that, if I ever had to go into that funhouse again, I was going to need some serious meds to do it.

Not 24 hours later, my awesome doctor called me personally on my cell phone. Let me tell you, as much as I adore my PCP, as much as I really enjoy chatting with him at the clinic during physicals and strep throat screenings and flu immunizations, I really don't want to hear his voice on the other side of my personal cell phone.

"Your MRI suggests you have lesions on your brain 

consistent with multiple sclerosis."

I was at a local coffeehouse reading over stuff from the last semester, desperately trying to cement into my brain the information of multiple technical classes because I really began to feel my learning ability had slipped to an all-time low. I still had another semester to go, and I was losing my grip on important things just as I was heading into "clinical season," where I would be working at a local hospital sleep lab learning on-the-job skills. Yes, you have it right... I was studying on spring break, worried about my ability to be able to master the skills of this challenging new career. My grades in class were fine, but it's a different thing working in the real world, with real patients with real problems like atrial fibrillation or diabetes or COPD. I began to doubt I had the capacity to finish out the program I had started with such enthusiasm and hope, and now my doctor was telling me I might have multiple sclerosis.

I told him, jokingly, that he had it wrong. I told him he was supposed to call me back and tell me I was just being a hypochondriac, that I should just buck up and admit that going back to school in my late 40s was a bit more than I could handle. Maybe a therapist would be in order.

Being the Most Awesome Doctor on the Planet, he hooked me up with the Most Awesome MS Neurologist on the West Coast, who just happens to practice in my city. (I can envision a great comic book series forming on the basis of this concept. Doctors wearing white capes!)

She and I consulted over symptoms, and we ran tests. I had a spinal MRI (complete with a visit from my new friend, Ativan). They took vials and vials and vials of blood. I sat in front of a TV screen and stared at wiggling black and white cubes until I thought my mind would explode. I had eye exams that looked intensely into the backs of my orbs in a way I'd never experienced before, and

damn if I could even pronounce the name of that procedure even now, even with perfect speech articulation and word recall. They poked my wrists and forearms with electroshocks to see how I would respond. I had a spinal flouroscopy, in which they drained tubes of cerebrospinal fluid from my back under the aid of a visualizing device. I had a whopper of a spinal headache three days later and missed one night of my residency. Needless to say, my worries about failing in my not-quite-finished new profession resurfaced. It was weeks before I would find out anything, so you can imagine I was a bit of an emotional wreck during these very busy days last spring.

Some good news came of all these tests. We isolated the wrist pain as a combination of carpal tunnel syndrome and arthritis through tests from an orthopedist. They also confirmed that I didn't have any optic nerve damage; I'd had another symptom, blurry vision, which I thought at first to be caused by good ol' old age and computer overuse... instead, my blurry vision was not a change in my vision at all, but a side effect of systemic inflammation. Blood tests eliminated a host of other conditions, like lupus, fibromyalgia, Lyme's disease and other chronic illnesses which can easily mimic MS. And my neuro, acknowledging my fatigue as real and understanding my fear of not making it through shift work because of it, prescribed to me one of only two medicines available to treat narcolepsy: Provigil.

Oh. My. God. [Cue the choir of angels on high.]

My neuro is not only a superhero, but she is also a saint. Provigil has truly given me back my ability to stay awake.

However, examination of my scans showed my brain salted with little "white spots" while sporting a couple of more prominent plaques or lesions near my hypothalamus (which regulates, guess what? sleep drive!) and near my right frontal lobe (the section that regulates speech, judgment, intellect, decision making, cognition, risk assessment, communication, etc.). That side of my brain was also just plain bigger than the other.

They also found something called oligoclonal banding in my spinal fluid, which is pretty direct evidence leading to a positive differential diagnosis of multiple sclerosis. Only with MS do you find o-bands in the spinal fluid. Think of them as the trail of popcorn that Hansel and Gretel leaves behind when they go into the scary dark woods, not suspecting a future that involves a candy house, a witch and a big-ass oven.

That was May 17, 2013. DX Day. But as I continued to have conversations with my neuro and my PCP and began to do some of my own research, just to understand this disease and what I might expect, I began to look backward... to symptom clusters going as far back as my late teens and early 20s.

I might have been diagnosed at age 47, but I have a sneaking suspicion that I've had this for a lot longer than a couple of years. There are connections one could make.

• Try this on for size. I've had two cases of mononucleosis, at age 16 and again at age 19. Mononucleosis is related to Epstein Barr Virus, which is now being linked to MS. So is shingles, which I had 12 years ago, and which heralded an odd metabolic problem I had which we corrected with a high protein, rice and vegetable diet.
• I came of age in the Pacific Northwest, which is the location of more MS patients per capita than any other region in the US. Apparently, coming of age here is of particular significance.
• We PacNWers are infamous for having vitamin D deficiency, thanks to low sunlight for much of the year. While I haven't had low D in the last 15 years, who knows what my vitamin D levels were like growing up?
• My parents were heavy smokers. Cigarette smoke, it turns out, could be a compelling trigger for a multiple sclerosis attack or onset. 
• I have two cousins and my mom has two cousins who have (or had) multiple sclerosis. 
• I remember bouts of terrible fatigue in my 20s... I would be commuting in Chicago expressway traffic at 6pm and have to pull to the side of the Kennedy--while cars and trucks screamed past me going 80-- in order to take a nap, otherwise I would've fallen asleep at the wheel.
• Those creepy crawly sensations I ignored previously? They took place at the same time as the leg tremor I had also ignored previously. And that was a time in my life when I recall being very, very, ridiculously, insanely tired all the time. We were spending a lot of time at the vacation home we built up north back then, and the 2-hour trip I occasionally took solo from home to the beach place was often interrupted by a quick roadside nap at the casino about halfway up I-5. 
• Every intellectual project I have ever dumped has always been on the heels of a long spell of inexplicable fatigue. 

Now I know that, while I did have UARS, I never had idiopathic hypersomnia (idiopathic, as a rule, means mysterious or unexplained). It was MS all along. Not anybody's fault, I might add. I was not having electrical shocks buzzing my toes or sweeping parasthesias or a leg tremor or strange word recall or speech dysfunctions at the time. Who would've known to look farther than a couple of sleep studies and some sleep hygiene recommendations?

So here I am not quite a year later. Yes, I completed my allied medical program, got my certification, passed my board exam, found a job and am now working as a polysomnographic technologist two nights a week, praise be to Provigil, great doctors and the determination to pursue this new path while I can. My employer knows about my MS but my direct supervisor doesn't. All my boss and coworkers know is that I really love this new career helping people and they seem to think I'm doing just peachy. So while I could lament this new "normal" that is shaping my reality every single day, instead I focus on being the best at my new job and try not to stress too much. It helps that I love the people I work with and feel very supported and appreciated as a sleep tech. I don't want their sympathy and I don't need accommodations. I just want respect.

And I remain positive, because I can. I have no outward symptoms and no disabling issues (aside from some cognitive challenges which are more a nuisance to me than problematic to anyone else).

It turns out I have two very close friends who have MS, and they are functioning individuals, working mothers with challenging jobs and athletic hobbies and a drive to live to the fullest. No small thing, walking among these other quiet superheroes in everyday life.

Also related: of all the demographic groups to be DXed with MS, the ones who will probably get away with the lightest "sentence" are just like me and my two friends--white women in their late 40s who can recall prior patterns of symptomology over periods of time. I can, and what this means is that my disease progression is probably very very slow. For my form of MS (relapsing remitting), the worst progression occurs earlier rather than later. I may be safe from major disability given these odds, and will likely have the same life expectancy, perhaps even the same quality of life, as I would have had I never been DXed. I'll just have to live with these annoying little symptoms and a lot of meds to keep things stable.

Easier said than done, but I'm up for it. Progression is the name of the game, you see; halting, even reversing MS, will make a difference, even if there's no cure or prevention for now.

I still have lightning bolts bedeviling my feet, I still have parasthesias and leg tremor and now I have

migraines. Stress and sensory overload are two major triggers, I know now. My head will tell me right away, with a strange sensation I feel-hear (but don't really hear) in my head, like cellophane crackling, and the odd feeling that my head is covered in a bazillion tiny July 4th sparklers.

I also get odd sweating that might be a symptom or it might be a side effect of medication (a whole new area of mysteries to unfold!). The fatigue continues to always be a concern,  but 9 days out of 10, I am functioning at 80 percent of capacity (or better). Special wrist guards are helping to delay any need for surgery in my wrists. Meditation and stress management help to keep other symptoms at bay.

But sometimes life is just going to be messy, and so I've also learned to surrender to the reality that "pushing through" MS is not really an option. Much better to put your feet up, drink some water, and let the symptoms pass. This is not a disease of wills, it's a war between my central nervous system and my hyperactive and invasive immune system. I don't really have a dog in the fight, not one that has a bite anyway, even though its my brain tissue and nervous system being held hostage on the battlefield.

MS doesn't have a cure.

You can't throw some radiation or chemo or surgical procedures or diet and exercise at something like MS and fix it. You learn to live with it, because that's all there is, except for the other alternative which I won't even engage here.

And so I live with it, hoping symptoms don't worsen, practicing everything I can to achieve optimal self care to stay the course, getting help when I need it, letting go of those things and people in my life who don't serve the purpose of stopping disease progression.

And I wait for a cure. It could happen in my lifetime.


-----
Thanks for reading.