The Salt Vampire’s Ugly Cousin
Way back in Grade Seven— Dr. Oakley Junior High, Calgary— Keith Gill spat on my bike. He was half my size, but I knew that if I spat on his bike in return that he would beat the shit out of me. That was the whole idea. This was an act of provocation. He was looking for an excuse.
I did not spit on Keith Gill’s bike. I went home, and I started doing push-ups. I got to one-and-a-half before I collapsed.
By that summer, though, I was up to 35. By the time I hit Grade 9 I was doing fifty. First-year university, 75. At the height of my pushing prowess— mid-eighties, doctoral studies at UBC, routinely slinging 25-horsepower Evinrudes across my back and lugging them around in the field like sacks of potatoes— I was doing 125 pushups at a stretch.
There were other elements to the regimen, of course, ranging from the cheesy spring set I inherited from an older brother to the home gym I bought in the nineties. For I while there I actually joined a fitness club; other times I availed myself of the workout facilities at whatever campus I was calling home that year. Running was a constant part of the workout from the early eighties on. These last years, here at the Magic Bungalow, it’s been mainly running and free weights and chin-ups, mixed in with (significantly lower) numbers of push-ups (tougher variants, though— where your feet are on a chair, or you put your hands on stools so your face descends below “floor level” on each dip). Point is, while I’ve never been any kind of athlete, I’ve been in pretty good shape ever since I was a kid. I’ve kept strong. Why, just last Wednesday I ran 10K. I did 13 chin-ups.
I wrote these sequences less than 48 hours apart.
This morning I couldn’t hold a half-full pot of coffee without trembling, without feeling as though my forearm was going to snap off. I had to use my thumb to depress the shaving-cream stud, because my finger wasn’t strong enough. I can barely hold a goddamn pen: look what’s happened to my handwriting.
It happened literally overnight. I have no idea why. Nobody does.
*
Some background: this started about four months ago, around mid-June. The BUG decided that she hated the sandals I’ve been wearing since before we met, dragged me over to Queen Street in search of replacements. I love the BUG— she saved my life, after all— and so did not complain. We each purchased a pair of Birkenstocks, slid them on, and proceeded to walk for 6.5 miles.
Thirty-six hours later I could barely move. Every groinal tendon was on fire. My knees felt like little exploding schematic diagrams of cartilaginous balls and sockets and springs, ready to go sproiiiinnggggg! the moment they folded more than a few degrees off dead-center.
The shoes, right? Those new fucking shoes. They’d screwed with my gait somehow, thrown everything out of balance. Couldn’t be the distance: I routinely ran further than 6.5 miles with no ill effects at all. So I chalked the pain up to experience and reunited with those beloved stinky old plastic sandals that Caitlin hadn’t quite been able to rid me of after all. I’d stressed my body past some limit, but it would self-repair over time; that’s just what bodies did. So the family packed up, and hugged the cats, and headed off to Greece.
Where my body did not self-repair. It got worse.
The stiffness, the frozen range-of motion, the pain, spread to my shoulders. Lifting a leg, bending a knee became an ordeal; pulling on my underpants was now a major event, each foot having to stamp and lift in repeated warm-up maneuvers until inertia and rebound bounced it high enough to crest the elastic of my Joe Fresh gauchies and plunge back down through the leg hole (please God let it be the right leg hole) while the outraged knee, bent briefly past some critical threshold, threatened to explode all over again. Sometimes I couldn’t quite clear the band; my toe would catch in the elastic and I’d topple like a big dumb one-legged redwood, roaring with frustration. The simple act of rising from the bed, sitting on the toilet, of bending over to pick something off the floor— suddenly, they were all spectacles you could charge admission for.
There was no real loss of strength, mind you. The moves hurt, but I could still do them as long as they didn’t require much range of motion. I didn’t have my exercise equipment but I could still do chin-ups from the arched trellis, push-ups by the pool. I could still go on extended futile hikes with the Unicorn Girl, looking for mythical mountain churches (even if what we mostly found was lizards). Some of you may have seen such expeditions documented on facebook; they all happened as described, even if I tended to fall over more often than usual. I did not get flabby or fat, for all the wine we guzzled.
It just— hurt. All the goddamned time. For the first time in my life, I felt old.
*
Home. Doctor. Referrals. All my subjective symptoms lined up with something called “polymyalgia rheumatica”, which if you go to the original Latin translates as we have no idea what causes this but the symptoms look familiar. No known cure (which goes well with “no known cause”). Goes away on its own after a year, maybe 18 months. Sucks to be you in the meantime, but Prednisone works really well on the symptoms. Mind the side-effects, though: osteoporosis, cataracts, plumpening, loss of muscle mass, meat tenderizing (i.e. your skin bruises if it so much as gets hit by a dandelion seed), penile slough—
OK, so much for the Prednisone. I guess I’ll just grit my teeth through the next year and wait for it to get better.
But then all the blood work came back negative.
Not that it would have told us much anyway. There is no smoking-gun diagnostic for PMR, which is not surprising because— once again— nobody knows what causes it. Mostly the bloods just test for tissue inflammation; RBC sedimentation rate, something called “C-reactive protein”. Those come back positive, and the doctors can say Aha! It is inflammation causing you pain! And while inflammation has a whole shitload of potential causes, today we are going to attribute it to polymyalgia rheumatica on account of where it hurts or something!
But my tests showed no inflammation. Everything came back clean. I’m subjectively experiencing every goddamn symptom of PMR— including, disturbingly, a week of symptoms consistent with Giant Cell arteritis, an equally-mysterious malady that frequently double-dates with PMR and which causes blindness if not treated— and my body doesn’t even have the good grace to show a generic inflammation response. Still, there we were. And things did seem to be manageable. Good days and not-so-good days; I was now officially a crotchety old man but I kept slinging the weights, kept pounding the trails even if I didn’t seem to be taking the 15K route any more. Just sticking it out until things get better, you know? And they would, eventually. Sure the bloods came back negative but those were crap diagnostics anyway; what else could this be?
So just last Friday, the BUG and I decided to walk to one of our favorite restaurants, a distance of about 10K. No big deal, right? I run that far all the time, and this would be a nice leisurely walk. Why, just like the walk we took back in June, after buying those accursed Birkenstocks. Pretty much the same distance, even. And to ensure my own pedular comfort, I wore my running shoes.
Apparently my lips were purple by the time we made it to the restaurant. The BUG didn’t mention it at the time, but then again she didn’t have to: I already knew something was wrong because my fingers had turned to pins and needles. That passed, fortunately. So did the fever and sheet-soaking sweats that kept me awake over the next three nights. Then there’s that mysterious, undiagnosable pain that’s been sitting on my should like a tax audit for the past four months; in the wake of our latest epic walk, it spread to abs and elbows and forearms, to the grinding bones in the heel of my thumbs, to all the places it hadn’t reached back in June when I was first laid low.
And this time, something scary and new. Suddenly I could barely grip a pen, had to use both hands to carry a bowl of cat food onto the porch. Last night I couldn’t even open the screw top on a bottle of wine.
Not me. Just the way I feel these days.
It’s not a loss of muscle mass. There hasn’t been time for me to starting wasting away yet. It’s as though some cousin of Star Trek’s Salt Vampire, some weird hokey rubber alien with peculiar dietary needs, has sucked all the ATP out of my muscles. It took a half hour’s effort at this laptop before I even started hitting the keys reliably.
I seem to be coming back again, bit by bit. The pain seems to be withdrawing to its initial habitat; it’s easier to lift a pot of coffee now than it was when I started writing this 24 hours ago (although typing still provokes a strange exhausting ache in my forearms). I’m no longer terrified of the prospect of standing: whatever my left testicle (and only my left testicle, curiously) was pulling on when those vectors aligned has backed off on its threats to rip my guts out. I hope, in a few more days, to have returned to that state of chronic creaky heartiness that I’ve been clumsily dancing with for the past four months.
But you know the most depressing aspect of this whole damn experience? It’s not the mysterious sudden onset or the acute painful incapacity, which has passed. It’s not the chronic stiffness, which had better fucking pass but which is manageable in the meantime. It’s not even the weakness, which I hope is temporary. It’s the insight that accompanies the weakness. It’s the time travel: this first-person, total-immersion glimpse into a future when there’s no onset or remission, no mystery disease to wonder about, no hope for improvement because I’m not sick: I’m just old, and this is just the way things are. A time when the simple standard baseline of my life is that I lack the strength to write a fucking “3”.
Why I Stopped Ego Surfing.
Anyway. I’ve got another appointment with the specialist in early October, although she’s already sampled half my blood volume and come up empty. I get the sense neither she nor I really know where else to go with this thing. So I’m coming here, to the ‘crawl. (I’ve already tried asking the Internet at large, but Google can’t even return a search on “Peter Watts” AND “Starfish” without filling my screen with bad porn; you can imagine what “polymyalgia rheumatica giant-cell arteritis pain stiffness no-inflammation C-reactive-protein” turns up.) Has anyone heard of anything like this— a system-wide gimbal-lock that kicks in when you walk a long distance, but never when you run it? Something that presents every subjective symptom of PMR but causes no detectable inflammation? Something that, you know, can maybe be fixed?
Anyone?
Because the next stop after this is the Healing Power of Crystals page on NewAge.com…
Lyme disease is the first thing that comes to my mind. Did they do specific tests for this?
http://www.mayoclinic.org/diseases-conditions/lyme-disease/basics/symptoms/con-20019701
Sorry to hear how things are. Hopefully it will get better. Just a theory but many of the symptoms sound a lot like Ehlers Danlos syndrome by itself or combined with Marfans syndrome.
Good luck and get better soon!
Peter, these symptoms are alarming.
Yes, I have heard of conditions that cause symptoms like this. The sudden onset and sudden changes in your symptoms are important things to bring to the doctors’ attention. Today.
You need an fMRI of your brain WHILE THESE SYMPTOMS ARE HAPPENING.
You also need a test that shows how the conductivity of your nerve sheaths is being affected.
Have your spouse call the doctor TODAY and say if you can’t get in to see a specialist today she’s taking you to the Emergency ward.
The trouble with neurological symptoms is that they show where something is happening in our lovely, complicated neurology but not WHY.
You have symptoms that could be due to Parkinson’s Disease, Multiple Sclerosis, or something more benignly baffling as migraines (Ask Me About My Migraine Experiences!)
But I want you to be checked for both Lyme disease and Amyolateral Sclerosis. And it would be really nice if they checked before the nerves affecting your speech and breathing are affected.
I’m sorry to hear about the unfortunate turn of events, Peter. I hope you find both an explanation and some relief soon. I’ll keep my fingers crossed that crowd-sourcing turns up some new directions for you.
I have no expertise in these areas, but I have heard of lyme disease producing effects kind of like those your describe. And, maybe it’s just from too much medical fiction, but my mind also went immediately to lupus and ms as both being associated with joint and muscle issues as early symptoms.
Good luck and, please, keep us posted.
Short of writing all the possibilities on a dartboard and throwing darts to determine which possibility to freak out about or get depressed about on any given day – I think that the best thing to do is stay on your current course of aggressively but dispassionately pursuing real explanations and living through each symptom that presents itself. You probably are better off turning down treatments like prednisone because you need to treat the cause of the symptoms rather than the symptoms themselves. And if you do treat the symptoms – go to your local dispensary before trying things like prednisone.
Certainly ask your doctor about some of the possibilities that people have mentioned. But be skeptical and as optimistic as possible about everything. We all tend to think of friends who were laid low by shit that came out of nowhere – but there are lots of people who learn that their symptoms are from more benign and treatable sources than initially suspected. In the long term, my own worst long term medical problems stem from things like having taken prednisone (which helped me survive the acute problems). But your pain’s not coming from inflammation.
Most of my medical problems have been caused by or are directly related to previous problems and treatments – so I can’t help but wonder if there’s any possibility of nerve damage or something from your successful battle against necrotizing fasciitis (the investigation of which brought up a host of other possibilities).
My other advice is to see as many different doctors as possible. I can imagine that the pain is making desperate measures seem palatable. But don’t go down that road just yet.
It’s a long shot, but you might want to try posting your symptoms on Ask Reddit.
Of course, a shitstorm is possible, consisting of a dozen side conversations about nothing in general, but you’re looking for those one or two gems that can point you in a new direction.
One thought: could this have anything to do with your semi-recent bout of flesh-eating disease? I know nothing about medical science, but you went through some serious shit there and I’m not sure if that disease could have laid the groundwork for what you’re experiencing now.
I kind of wish you’d submitted the paperwork to get your USA travel privileges restored. A trip down to some of the top-tier hospitals in Boston or D.C. would be warranted in this case.
Best of luck for a speedy recovery. Please keep us posted on your progress. If you’re not feeling up to it, perhaps enlist Caitlin or the BUG to post on the ‘Crawl on your behalf. We just to know that you’re ok.
Ah dude, sorry to hear you’re having to deal with some disturbingly local and non-fictional meatreality horror.
If it makes you feel any better, I’m still out here annoying my friends by telling them to read Blindsight, and literally printing out copies of the Sunflowers stories to shove at them.
Holy cats! I hope things improve for you soon.
Sorry to hear this Peter. I was just going to tell you to suck it up, but if you can’t open a bottle of wine, it must be serious.
I would rule out Marfans as the cause. It’s symptoms are things like scoliosis, collapsed lung, myopia, etc. but general body pain and lack of energy are not typical.
Peter, I feel so sorry for you and I also hope that it does turn out to be something like Lyme Disease. As horrible as that sounds, at least it’s identifiable and treatable, even if treatment will take a fairly long time and be less than incredibly fun. I hope you don’t run afoul of the sort of people who will tell you “we have no idea what else to do” and then put you on antidepressants just so that it doesn’t bother you as much.
Look, I understand how this feels: I wasn’t quite 35 when after a day much like any other day and a night much like any other night, I woke up one morning and could not turn my head to the right, at all. None. Couldn’t do it with direct volition, couldn’t do it with my hands assisting, and after trying a bit too hard, the pain started to set in. I couldn’t work, waved bye-bye to my fairly decent-paying construction job learning all about hardwood floor from one of the region’s best. The situation only got worse and the drugs I was willing to take (or could be prescribed) did nothing.
I had a lot of the same sort of things you had, transient weakness and sometimes the weakness would be in one limb or set of limbs, sometimes in another. Sleep disturbances set in, though I have to mention obliquely and in a very obscure way that the diagnostic picture was extremely murky, and to point out TV’s Dr House muttering “Everybody Lies“.
What helped me the most in terms of pain reduction was chiropractic. Yet after all of that time, for me, the treatment helped but it was a maintenance effort… until the lady bone-cracker basically put me halfway to a pretzel and quite literally cracked my ass. This wasn’t the usual sacroiliac reset but was a bit more intense and moved the coccyx as well. From that point, I could finally stand correctly once again, and years’ worth of memory of pain became a few weeks’ worth of pain mostly fading away. Exercises thereafter included a lot of sit-ups since abdominal core stabilization is strengthened with those muscles.
If this turns out to be something like spinal arthritis (bone spurs in the neck/upper-thorax) it shouldn’t surprise you much, common motions can splinter off pieces of the bone spurs and they can wander. I really think it’s probably something like Lyme, but maybe not. I do recall how a bad back had effects far beyond mere inflexibility and/or pain. Sometimes a person learns to block the pain, but even though they know how to block it, the neurological system is still experiencing it, like that character in your last novel. Significant degradation/impairment of even seemingly unrelated systems could result. My best recommendation on that is that you should never pass up an opportunity to sleep while relatively pain free. In my experience, that is when you will get the best or most-thorough deep recovery healing. Even if it’s something infectious, that would still apply.
Best wishes,
My dad has spinal stenosis in the lumbar and cervical region and gets the weakness, pain, and tingling nerves.
Have you had MRIs (or whatever type of imaging is appropriate) to check your spine and brain?
updated to add: also, if you have trouble doing your normal exercise, maybe see if the doctor can recommend other means? Like maybe walking in a swimming pool. I saw that get recommended when I was reading up on non-surgerical treatments for spinal stenosis.
Peter, any lateralization of symptoms? Any rash no matter how small or transient? And, would you say your hips and shoulders are weaker than your calfs and wrist muscles? Any weight loss? Night sweats? Change in bowel habits? How tall are you?
Hope you feel better and I’ll let you know if a quick literature search turns up anything.
This is awful. I hope you get this figured out and get better!
In addition to Lyme (have you been jogging where there are deer?),
Lupus (genetic, late-onset less likely), and
MS (increased risk with lack of exposure to sunlight and a diet with too many saturated fats),
Guillain-Barre is worth being aware of; it tends to show up after viral infections, even mild ones.
These symptoms are also consistent with exposure to toxic pesticides.
It does not sound like arthritis because of the weakness, definitely something neurological.
So doctors should be asking you what outdoor places you frequent and asking about recent episodes of flu or other viral infections.
Hmm, the Lyme disease direction might be worth looking into. It’s not unheard of in Toronto, and there seem to be a few hot spots this year.
Here are a few relevant links that confirm that Lyme disease is a small, but growing problem in your area. Have a look at the map (first link) and see if you’ve passed through any of these areas…
http://www.publichealthontario.ca/en/eRepository/Lyme_disease_risk_areas_map.pdf
http://www.cbc.ca/news/canada/toronto/ticks-lyme-disease-parks-1.3575190
http://news.nationalpost.com/news/ticks-that-cause-lyme-disease-found-in-four-toronto-parks-health-officials-say
Peter, I know it’s small comfort but having read your post, I will be thinking of you. The condition sounds terrible, and incredibly hard to bear. I do hope that you will be able to find speedy medical solutions which at least make it more manageable.
Holy crap, Peter…I have no idea what could help, but I hope someone does. I am so sorry! I hope you find some sort of help. I’d pray for you if I thought Azathoth gave a shit, but he doesn’t. Perhaps I’ll stick some in the Niblet Memorial Kibble Fund, in anti-Darwinian solidarity.
I did do a Google search using your suggested words, but adding “(mimic OR mimics)”. The following came up and some of the case histories may prove of interest (though not necessarily desirable):
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1281460/
(and references therein)
Also, this:
http://www.turner-white.com/pdf/jcom_mar09_polymyalgia.pdf
and
http://www.bpac.org.nz/BPJ/2013/June/polymyalgia-rheumatica.aspx
Still, I’d hope that your doctor is aware of those differential diagnoses.
My mother had a bout of something like this, but much shorter (it was over in 3-4 weeks) and initially more acute. Here’s hoping that you make a full recovery.
That sounds like hell. I hope a cause is uncovered before too long.
First, what Paula said: get thee to an ER. Sudden changes need to be assessed right ducking now. Second, and this is probably a stupid question: is it possible that your “maybe spider bite” that was never determined but Les to necrotizing fasciitis was in fact a tick bite? Certainly a good enough argument for a Lyme assessment. And Jesus God, be well, okay?
Since everybody else is going the neuro/biological route, this also reminds me of poisoning, though I’m having trouble finding the “House”like story about the metal in question {manganese?} from some years back that included blue lips and fingernails. Doesn’t quite sound like manganism or exposure to high levels of nitrates such as in fertilizers, but purple or blue lips, aka cyanism, is oxygen having trouble traveling to the extremities. Causes such as coronary embolisms {which I assume are ruled out} and ruptured veins, especially in the legs, could account for some of this.
PS Hanging on to cut hair and fingernails may reveal the timeline of exposure if so.
Get well soon please, Peter. And definitely see if they can’t rule out Lyme disease.
I just found your blog a few days ago. I’ve been reading and really enjoying your books and stories. Then I read this.
I’m not a doctor. I don’t even play one on TV. But I do take care of myself. I’m a cyclist who developed atrial fibrillation in April of last year. There were a series of things beginning to go haywire leading up to that — loss of energy, tremors, muscle cramping, more tremors; you get the picture — and then one day I started having episodes of irregular heartbeat. It is impossible to explain how that feels to someone who’s never had it. My condition worsened over the next two months, but by then I had self-diagnosed a probable electrolyte imbalance (cardiologists are next to useless for what is called “lone atrial fibrillation,” meaning afib with no recognized risk factors or physical causes), and I had begun to take magnesium supplements in liquid form.
My condition improved substantially over the next six months, but I began to experience some things that are similar to what you mentioned. Muscle weakness, localized pain that lasts a few hours to a few days then goes away, continued problems with tremors (my handwriting was less legible than your own), in addition to the episodes of heart arrhythmia that lasted from a few minutes to a couple days at a time. Even now, eighteen months on, I get these sorts of things happening. Like today, I didn’t do anything out of the ordinary, but my sternum is very sore if I twist my torso to the right. Less so to the left. It will probably be gone by tomorrow. Just weird stuff like that.
Anyway, I just wanted to say that for my situation that has some similarities to your own, I have found magnesium to be helpful. I can discuss the best forms to take if you are interested (email me). Our bodies are complex things, and it has been my experience (I’ve seen several doctors in the last 18 months) that modern medicine knows relatively little about how we actually work. Take that as you will.
Keep a positive attitude. Stay away from the news. Feel better.
Are you taking a statin? Just a thought.
I guess this is unlikely, since you probably would have mentioned it, but they can cause some pretty crazy and unpleasant muscular and joint problems. In my case the onset was delayed several years from the date I stared using them. Then over about six months I started having terrible symptoms and effectively aged 30 years. (I quit and I’ve gotten a lot better.)
I hope you get better, and maybe even figure out what went wrong.
If it’s any consolation it took my doctor three months to diagnose me using blood tests: rheumatoid arthritis with a side order of fibromyalgia to go. For the latter I take Vitamin D to address deficit.
I would want to rule out Lyme disease.
I would also want to rule out some event: TIA i.e mini stroke, or spine damage.
Then it’s down to a differential diagnosis based on symptoms and response to medication, with the caveat that all this is highly idiosyncratic.
As for trawling the internet, my suggestion is don’t, unless one has a high tolerance for anxiety or ability to be objective about symptoms, as most people tend towards catastrophizing outcomes and end up being hypochondriacs. You have my email if you need to talk about anxiety management.
Hi Peter,
What is your diet like, and have there been any changes to it recently?
How much coffee/caffeinated drinks do you drink a day?
Rheumatoid Arthritis sounds like a candidate, and it has been suggested that the amount of coffee you drink can be a strong risk factor for developing it, and that removing gluten from your diet can improve the symptoms:
“A vegan diet free of gluten improves the signs and symptoms of rheumatoid arthritis: the effects on arthritis correlate with a reduction in antibodies to food antigens”
http://rheumatology.oxfordjournals.org/content/40/10/1175.full
“Occasionally, patients experience an explosive polyarticular onset occurring over 24 to 48 hours. ”
(http://www.hopkinsarthritis.org/arthritis-info/rheumatoid-arthritis/ra-symptoms/)
“Inflammation of tendons can create pressure on your nerves. This may cause numbness, tingling, or a burning feeling in your hands”
http://www.healthline.com/health-slideshow/early-signs-rheumatoid-arthritis#8
“An estimated 20% of RA patients may experience clinically significant symptoms affecting the peripheral nerves (those nerves outside of the brain and the spinal cord).”
https://rheumatoidarthritis.net/symptoms/nerve-symptoms/
Good luck and please keep us updated if you can.
Peter, I happen to be a neurologist, and after reading your history my first hypothesis would be some kind of muscle illness, possibly a miositis. If you haven’t done it yet, the first exam I would recommend would be an electromyography, to test both nerve and muscle activity; you should also check CPK (creatin phospho kinase) levels to assess musce injury before doing the exam (as the EMG itself may raise them).
I don’t know how things go up there in Canada, but here in Italy we would definetly recommend hospitalization in a case such as your. If you want, please feel free to contact me.
Furthermore, the fact that you have been suffering form skin problems, which have been attributed to a vasculistis, leads me to speculate that you might have some chronic inflammatory condition, which is now causing the muscle weakness and joint stifness. IMHO you should check auto antibodies levels, not just PCR or ESR, both of which may be normal, even in some vessel artheritis. Other causes that have been suggested seem quite unlikely to me: I think you have a rheumatic, self immune problem- maybe anti sinthetase syndrome, but that would be a wild guess. I agree that you should either go to the ER or have an ambulatory visit (neurologic or immunologic) in a few days.
Really sounds like Lyme to me. My sister and father have both had it – Unfortunately the standard spot tests that most doctors use can return false negatives depending on how recent / long ago an infection was. If you contracted it within the last 6 months or so, you have an 80% chance to have it screened positive on the first test. My sister screened negative on the standard battery test – and had a doctor who knew the limitations who ordered a more full spectrum set of blood tests and found she was positive.
The biggest indicator doctors go by is an unexplained rash. It is often ticks in the nymph growth stage that infect humans. Which results in non-visible bites, and no attached insect that is easy to point to. And not everyone gets the typical rash from a new infection.
Every option is worth exploring, but a doctor who is willing to do more indepth testing for Lyme could be very valuable.
This reminds me of:
https://www.crowdmed.com/
Since you’re already crowdsourcing the problem, maybe you want to try throwing some money at a more specialized community and see what comes out of it.
The only references I have about crowdmed are these two podcast episodes detailing how this online community fared while trying to solve a couple of medical mysteries:
https://gimletmedia.com/episode/42-blindspot/ and
https://gimletmedia.com/episode/75-boy-wonder/
If I recall correctly, it sort of worked for the first one, but not for the second one.
Hope you get better soon.
Perhaps this website for crowd-diagnosing conditions may help: http://blog.crowdmed.com/crowdmed-patient-hope-featured-on-reply-all-podcast/
It’s been featured on a podcast I listen to a few times
I agree that Lyme disease is a possibility; I don’t have much experience since it is really rare in southern Europe. However Lyme artheritys, which would account for Peter’s symptoms, is a late manifestation of the disease, and at that stage allmost all patients have a positive ELISA assay. So a negative result should in facts rule out the diagnosis
Sounds like an extreme version of what i’ve got. Fibromyalgia. No known causeor cure. Try a low oxalate diet see if symptkms2 get better. Takes time. Trying low oxalates yahoo group has information on diet etc
Ask your doctors to run a test to see if it’s a form of St. Vitus’ Dance. I know it’s a really wild guess but what the heck.
Peter,
It’s a stretch, perhaps, but consider a limbic system impairment (causes vary). Get “Wired for healing” by Annie Hopper and see what you think.
Best,
A boingboing reader
Blood work negative, No Inflammation response, Pins and needles..
I would have someone take a look at your back/spine and check the neurological angle.
Couldn’t hurt to see a chiropractor/sports medicine expert on the side.
Now I feel guilty about feeling self-pity for wrenching my shoulder painfully with a sneeze the other day. (Wait does that make this recursive self-pity now). Unfortunately, I am not a doctor, so all I can offer is my hopes that you find an answer and it’s easily treatable.
Thanks everybody. This is really helpful. A lot of stuff in here I hadn’t considered, including the possibility that I could be dying of MS or ALS. This is what I get for being a optimist.
Lyme seems to be the odds-on favorite, but there’s no swelling associated with any of this. Just pain and stiffness. Also, the rash associated with the initial bite looks pretty hard to miss, and I don’t remember anything quite so conspicuous discoloring this alabaster skin. Still; I’ll definitely bring it up with the doctor next I see her (I’m also compiling a list of symptoms Pre- and Post-relapse).
In the meantime, strength continues to return. High-coordination stuff like typing is still tiring, but last night I managed a chin-up while the BUG wasn’t looking.
Those things seem to involve hyperflexibility at the joints, and hyperextended digits. I got none of that.
The weird thing is, I did take prednisone for about three days, since one of the diagnostics of PMR is “prednisone disappears the symptoms”. And it did; overnight, my symptoms vanished (at which point I stopped taking the steroid, on account of those nasty side-effects). But here’s the weird thing: prednisone is an anti-inflammatory. All my blood tests and X-rays showed no inflammation. So why did prednisone suppress my symptoms?
Dude, if you think I could afford top-tier treatment in the US medical system, you are sadly misinformed as to the income of your average midlist science fiction writer.
Which immediately brings to mind the image of a crippled James Caan ramming the burned and blackened pages of :”Misery’s Return” down Kathy Bates’ throat at the end of “Misery”, screaming “Choke on it you sick, twisted, FUCK!!”
Thank you. I needed that.
I am not a doctor, but some things to consider:
A. You mostly describe muscle or peripheral nervous symptoms. Are you having any sensory or central nervous symptoms?
B. Do you have unusual responses to certain meds?
C. Do you have polyuria or other kidney issues?
D. Are you taking any meds or dietary supplements?
For my part, I’ve been struggling with hyperacusis and strobe-induced vertigo for the past few years. I knew that aspirin and other nsaids can cause hyperacusis, but didn’t know that many common drinks and spices are chemically related and can also cause hyperacusis. Since you don’t describe any sensory symptoms, salicylate overdoses, fibromyalgia, and Lyme might not fit.
Christ on a bike. V sorry to hear this. Apply that mighty brain to getting it sorted. When are you next seeing the doctor?
Dr Watts: please take this person’s advice seriously, or you could wind up like me! (Just kidding, I’m one of a kind. We all hope.)
Peter, if you do decide to start wondering if maybe this could all be cured by more biotin in your diet, probably not (biotin is just an example). But you may have hit a nail on the head with your remarks in the original posting. Age does creep up on us no matter what we do. There’s a point where all of the exercise and regimen that we did as younger folks stops being something that builds us up as part of a daily routine, and eventually becomes something that breaks us down more than builds us up. Exercise is important but if you are no longer a kid you may want to move away from the higher-impact stuff like running and start picking up stuff like yoga, tai-chi, and/or long-distance swimming.
First step, as always, is “first, do no harm”…
But to answer your question about how prednisone reduces symptoms although your tests showed no inflammation, have some smart person other than yourself compare your symptom list with something that prednisone is sometimes used to treat, that being Adrenal Insufficiency. Please keep in mind that I am not a doctor, probably not all that sane, even.
No, but I’ve twice experienced a brief weird little electrical shock between my shoulder blades which apparently indicates that my whole CNS may be shorting out. I don’t think it’s terribly likely (I don’t think I’d be recovering if it were, for example), but enough people are telling me I should that I’ll make a point of asking for one.
Bilateral manifestion of joint pain, yes (although the right knee tended to be worse than the left). Also whatever my testicle was dragging on every time I stood (which made said standing very unpleasant indeed) only affected the left. And that, thank Christ, has almost entirely subsided.
All other pains symmetrical.
Not since 2011.
Interesting grouping. Wrists weakest. Calves seem completely unaffected (although granted I haven’t gone running all week). Hips and shoulders, can’t tell how much is actual weakness and how much is just pain from exceeding range-of-motion.
7lbs since Friday, but it’s not unusual for me to lose as much as 3-4lb just during the course of a run. It comes back.
Christ yes. Three or four nights worth. Thankfully those seem to have stopped.
Hard to say: I wasn’t eating over the weekend/early week so there’s obviously reduced throughput. Taking that into account, nothing obvious.
Shade under 2m.
Lyme was the second thing I thought of.
The first, though, was hemochromatosis, which can apparently produce a lot of the symptoms you describe. A coworker had it, and they had the devil’s own time diagnosing it. Elimination diets, the works. Fortunately (from what I vaguely recall), if that’s what it is, it’s fairly straightforward to treat.
Jesus Christ on rubber crutches, man. I have no medical knowledge whatever and as a consequence have nothing useful to add, save to say that under no circumstances will you be allowed to die on us now. The genre needs you, desperately 🙂
Peter, swing on over to boingboing.net. Cory Doctorow ( whose post on that blog introduced me to Blindsight many years ago) has posted your dilemma to that blog’s large readership. Very good of him IMHO.
There’s a small discussion going on in reply to that post you should look at. Some people suspect Behemoth, but there is an interesting theory about one of the antibiotics you might have taken when you were recovering from necrotizing fasciitis. The poster’s mother had a similar reaction and it might be applicable to this situation.
You’re in our thoughts, as always.
Oh boy. Three cases diagnosed as PMR and they all turn out to be cancer instead. Thanks for the heads-up, JL.
Surely some of those litres of blood they took must have gone towards a T-cell count. Another question to add to the list.
Well, if it is a stupid question, we can share the dunce cap because it’s been on my mind too. Still, 5 years sounds like a pretty long incubation time (although I do see “months to years” listed as rare but documented).
You must be mistaken. Every medical mystery ever presented on “House” turned out to be caused by a tumor.
Hi Bill. Pleased to meet you. Sorry it has to be under such shitty circumstances.
Nope. Does too much coffee count?
My partner is a behavioral neurologist — I believe you once shared a panel with her at SFContario. She’s unwilling to give any advice without giving you a thorough examination. But she says that your condition *sounds* rheumatological. The negative bloodwork isn’t definitive; she also has recurring rheumatological / arthritic problems, and even when her finger joints are aching and the fingers are literally red, there are no inflammatory markers in her blood.
To me, I’m reminded of the symptoms of my own spinal-cord problems, in particular the unilateral testicular pain. My problem was finally diagnosed as a syrinx, at the bottom of my spinal cord — “syringomyelia”. For the whole-body stuff you’re describing, it would have to be very high up. The weakness sorta-could be a manifestation of most of the muscle fibers not being triggered. This “diagnosis” is kind of a long shot, but could be tested with an MRI, which you really ought to get done. If nothing else, it would help to rule out a number of trouble sources.
Sorry to hear this, I hope you get well soon. I know nothing about medicine, but some other people here seems to have that covered.
My only suggestion, if you don’t get an answer is to get a second opinion and have that doctor redo the tests, as to avoid lab-tech-having-a-shitty-monday and mistakes were made type of thing.
Hi Peter,
I read on boingboing that you had been treated for flesh eating bacteria. Were you given Levaquin or Cipro? Fluoroquinolones (which those both are) are can cause tendon rupture and peripheral neuropathy (the FDA says ‘these antibiotics may cause potentially permanent damage to muscles, tendons, joints, nerves and the central nervous system’.)
I’m really hoping that’s not it, because there’s not much that can be done to reverse the effects. But it would explain your symptoms, and why bloodwork isn’t showing anything.
Best wishes from a Cipro sufferer.
No (new) potential diagnosis, but an odd question: do things hurt when someone else moves them? That is, if someone stretches your arms or legs while you relax, does it hurt about as much as when you do it? Does it hurt a lot more when you resist them moving you?
Tests where you’re being active (resisting, doing the movement your self) test the active structures: muscles, tendons, etc. Passive tests, where you’re being as passive as possible, test the passive structures like joints. With no inflammation, I’m wondering whether we can narrow this down to muscles rather than joints. Not that this will diagnose anything, but it might help.
Best of luck and good wishes from here!
Peter: did you ever have chicken pox? Your symptoms sound very remniscent of shingles, which several of my friends have suffered from. It only comes to those who had chickenpox as kids, and it always goes away fairly soon but seems to take forever due to its extreme painfulness. So far, I’ve not had it, but I’m nervous about it.
I wish you good luck and astute diagnosis.
Do please talk to your doctor about what exercises are safe for you right now and also check if you should be exercising with someone around in case something weird happens.
4-5 mugs, generally.
What?
Angelo, thank you so much for this (and your follow-up posts). It gives me something I can really sink my teeth into when I next see my GP, something she won’t be able to dismiss as internet noise. I will certainly follow up with these.
That’s good to know. It was the absence of a rash that made me dismiss Lyme off the top.
No tremors, though. Plus way at the wrong end of the age scale in terms of vulnerability.
Well, if it was limbic, man could I get some decent blog posts out of it.
Peter Watts,
Not an actual House episode, but rather, IIRC, five people with same symptoms in multiple countries misdiagnosed until a specialist figured out it was poisoning. Again, think that was manganese but damned if I can find any reference to the case now Seems like some were in China, and either New Zealand or Australia comes to mind for some reason, maybe where the doctor or clinic was.
Hello.
Maybe you will be interested with the following information:
I know a healer who lives in Moscow.
This is a very good professional who works with patients who are seriously ill.
She even knows how to Wake people from a deep coma.
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No to pretty much all of that, except a couple of moments when something vaguely-electrical-feeling pulsed down between my shoulder blades. That felt neuro. Other than that, though, clean on all counts.
Yeah, but this didn’t creep up; it pounced. Twice. I think Jena confirmed overhead that regular ageing doesn’t work like that. (My in-laws agree.)
Huh. Had not heard of that one.
Fortunately (for me), no diabetes, no heart issues, no cirrhosis or testicular failure (if you don’t count that pain which passed– although I don’t know how you’d quantify a “failed” testicle anyway in this case, since I got sterilized in 1991).
Thanks, Joel. That’s good to know.
Nope. Not unless someone snuck it into a bottle of Baileys or something. So that’s one thing I don’t have to worry about.
For the most part, they don’t even hurt when I move them. For example, it hurts if I raise my foot any great distance from the floor using only local muscles— but if I grab my knee with my hands and pull the limb up, I can bring myself almost to full range. As I approach the the edge of that range, though, joint pain becomes an issue.
My GP put me through the usual active-resistance, push-back tests back when I first saw her; I had plenty of strength then. Probably less since the relapse, but my strength does seem to be coming back pretty steadily now. With my luck, by the time I get in to see her again, there won’t be any damn symptoms and she’ll tell me it’s all in my head.
Hi Spider. It’s been awhile.
Yeah, I had chicken pox as a kid. And mumps. And impetigo. I should be safe from all that stuff.
I haven’t read all the comments, so it’s likely this has already been mentioned… Have you taken a levaquin-family antibiotic? They’re known for causing tendon problems, and these problems can hit several months after stopping the antibiotic.
I clearly need to work on my writing and/or on completing writing down thoughts whose beginning I did actually write.
Sometimes we have a regimen that keeps us quite fit, particularly about being fit at pursuing that regimen. Yet continued fitness at that regimen is not necessarily overall fitness. Your apparently great cardio side of your workout may leave you with a heart that’s quite fit for a night out dancing, but a regimen of fairly pure running might leave you without certain elements of flexibility, or a tendency to move in certain ways that are great for running, but might give you a slipped disc when doing whatever dance it is that they are doing nowadays, that you don’t usually do. My apologies if this isn’t a clear example, a better one might be that if I spent years studying martial arts and doing all of those awesome stretching exercises and perfecting the arts of self-defense, it still might not keep me from injury if I did a face-plant down at the ice-skating rink.
As aging continues, we may be all very well-preserved, but we do something outside of our usual pattern — for you it might have been the Birkenstocks — and the creeping inflexibility to change shows up. Something gets a bit kinked. Yet the difference between us and “the kids” is that they “walk it off” and we turn out to have just discovered our tipping point into a cascade failure.
And it gets even more complicated. You’ve already survived NF so who knows what your immune system is primed to do. I seem to recall that in the past people have had secondary problems such as rheumatic fever and smooth-muscle tissue damage as follow-on to strep throat. I don’t recall what was the pathogen in your particular case of necrotizing fasciitis but if your immune system encounters anything much like it, perhaps you’d get an oversized response. That could have knock-on effects etc. Additionally I seem to recall that NF almost got you good because of your high pain tolerance, so if you are reporting “some pain” people investigating this should probably be reading that as “intense agony”.
About Lyme, again: a neighbor got it from the damned deer in our neighborhood. They are such yard pets that people should consider them neighborhood cattle and chip in to get them their shots to prevent this sort of thing. My neighbor was on the young side of middle age, generally very healthy, had no sign at all, no bullseye rash, and then *boom* in the hospital for 6 weeks with everything from pneumonia to convulsions to a two-week coma and eventually almost complete recovery, but the Bell’s Palsy he got was commonplace as a symptom, as are the repeated bouts of weakness and trembling and occasional difficulty with balance. Oddly enough, cephalexins and eventually cipro are on the list of usual treatments.
Get well soon, I know how badly being disabled sucks, however briefly.
Any chance of Zika? Not normally something a Canadian needs to worry about…
Dr. Watts,
Another blog reader/fan with a medical degree checking in. I’m not in clinical practice as of now due to health concerns of my own but I like to keep my mind sharp using diagnostic puzzles.
Damned sorry to read about your bout with a mystery illness. As Angelo mentioned, some form of Myositis would appear to be a good angle to consider. Lyme disease can present with some of the symptoms you’ve described like others have mentioned as well, but the region I’m from in the US has an issue with over-diagnosis of said disease so I’m usually a bit extra skeptical when it comes up.
I happen to have some free time this evening/tomorrow morning, so I’ll try to spend some of it reading back over the symptomatic information you’ve shared thus far. I can’t make any promises of course, but perhaps I can add something to the discussion you’ll be having with your specialist.
I’ll send good vibes your direction!
[…] The Salt Vampire’s Ugly Cousin [Peter Watts/Rifters] […]
chemical and biological terrorism done with a particle beam weapon did something similar to me
Just to note it so that someone more kowledgeable doesn’t have to waste time on it: Having had chickenpox doesn’t rule out shingles, it’s the prerequisite for it! Shingles is the Return Of The Hidden Virus there. Definitely something to check (as is Lyme).
In any case, this all sounds like it purely sucks, and certainly throws my own bum shoulders into perspective, You have my sympathies!
Have you been in any areas where pesticides were recently applied? The sudden onset and specific loss of motor function (handwriting) could well result from exposure to (or allergic reaction to) a pesticide. Something to consider in your analysis of what could be wrong.
In any event, I hope it clears after you have identified a cause!!
Awww…. Sorry to hear about this. I really hope you get well soon.
I’m experiencing iffy neurology myself since the last few months. No idea why. What has been helping the most is to stretch more, and do less, physically… and stretch (stress) less and do (decide) more, mentally.
There. I saved you a trip to the crystals pages on newage.com 😉
No, that’s the tricky thing about Lyme. The initial rash may go undetected depending on where the bite happened–some people dont get it at all–and the early symptoms are easy to dismiss as the Flu. To top it off the blood testing for Lyme isn’t completely reliable. As time goes by and the disease remain untreated, it will develop into any number of hellish symptoms, including the things you describe. The Lyme tick population is spreading, including into your neck of the woods. We’re pretty paranoid about it in the wooded area where we live.
I’m so sorry to hear you’re facing *another* obscure and debilitating medical issue. I hope you get a handle on it quickly.
A few people have mentioned allergies, reactions to pesticides, etc. This is a long shot (I favor the Lyme hypothesis myself), but IMHO it is worth considering trying an elimination diet for a few days to see if that affects your symptoms.
Peter Watts,
I have seronegative rheumatoid arthritis, which has been, at times treated with prednisone. I have no inflammatory blood markers (sed rate CRP etc all normal) and no Xray inflammation. That doesn’t rule out an inflammatory disease. Prednisone fixing it seems to indicate inflammation.
And when I was first diagnosed, I couldn’t hold a coffee cup, so it still could be rheumatic/autoimmune.
No answers but just so you know.
Well, it looks like whoever is running this simulation set your LIVE_IN_INTERESTING_TIMES flag to TRUE 🙂 Best of luck Peter, I hope you get this cleared up asap.
Man, I wish I had a useful medical-related degree – but it’s heartening to see that so many commenters do, and there are a lot of helpful looking suggestions. All I can say is I really hope you get well soon
“The epidemiological study, by Dr Markku Heliovaara of the National Public Health Institute in Helsinki, Finland, … found that the number of cups of coffee people drank each day was directly proportional to their risk of developing rheumatoid arthritis “rheumatoid factor,” a serum measure of a type of protein that plays a role in the development of rheumatoid arthritis. People who drank four or more cups of coffee a day had twice the risk of those who drank no coffee, and those who drank more than 10 cups a day were about 15 times more likely to have rheumatoid factor.”
>> People who drank four or more cups of coffee a day had twice the risk
At the risk of seeming an anti-gluten nutcase, or the resident duck squeezer – please try removing gluten from your diet, start eating turmeric for its anti-inflammatory properties and drink less coffee.
You can do all of these things while pursuing a diagnosis, and at the very least they should ease your symptoms.
Can you describe your current diet to us?
Sorry to hear about your trouble, Peter. As someone with multiple sclerosis, my first instinct is to suggest an MRI. Get better.
Here’s the directly link to the Boing Boing post, as I suspect you’re likely a bit overwhelmed with things:
https://boingboing.net/2016/09/22/sf-writer-peter-watts-needs-he.html
In regards to Lyme, as I understand it, there’s roughly two phases: initial infection and chronic Lyme. The initial infection is usually (but not always) a bulls-eye rash and a high fever. Chronic lyme pops up years or decades later. So, I wouldn’t expect to see a bullseye rash in your case, because with chronic lyme symptoms, you’d have to be asking things like ‘did I miss a rash several *years* ago?’. I’d suggest the test, at least to get an answer.
Also, with regards to shingles, chickenpox isn’t prevention for shingles: chickenpox is the first infection you need to develop shingles later in life. So, having had chickenpox puts you into the risk category for shingles.
“Anyone who’s had chickenpox may develop shingles. After you recover from chickenpox, the virus can enter your nervous system and lie dormant for years. Eventually, it may reactivate and travel along nerve pathways to your skin — producing shingles.”
http://www.mayoclinic.org/diseases-conditions/shingles/basics/causes/con-20019574
Best of luck with everything, I hope that at least some new avenues of exploration can be opened through your post.
My apologies. I forgot Boing Boing moved the comments section to their internal forums.
The link to the discussion and some diagnosis thoughts on boing boing: https://bbs.boingboing.net/t/sf-writer-peter-watts-needs-help-diagnosing-mysterious-debilitating-illness/85922
I second the comment about fluoroquinolones, so definitely worth checking with your doctor. Another possibility would be to talk to an immunologist. I recall reading somewhere credible about a kind of post-infection syndrome in which the immune system becomes hypersensitive and reacts overly aggressively to mundane cues.
Best of luck. Undiagnosed illness has its own special horrors.
Tentatively offered: Dynamic Alignment through Imagery by Eric Franklin, in case this really was a result of something being thrown out of alignment.
Advantages: a lot of information about how bodies really work and a variety of methods for thinking more clearly about moving. Cheap. Safe. Not New Age. Could help make life somewhat easier even if your problem isn’t solved.
Some knee problems got a lot better for me when I found that a thigh should rotate *outwards* when its knee is bent. I think I’d been doing it backwards.
Disadvantages: May not be relevant to your problems. Amount of information may be overwhelming.
For what it’s worth – I’ve had a few attacks that, in terms of quickness of onset, symptoms and type of pain sound like what you describe. It was much more localised though (groin, ankles, lower back). Spent a very exhausting 4 months or so trying to figure out what it was, ended up walking with crutches for a while because of the pain and range of movement issues.
Diclofenac and Etoricoxib worked well for symptom control (these are non-steroidal anti-inflammatories, i’m not a clinician so I don’t know if the negative inflammation markers in the blood samples rule this out).
The ultimate diagnosis was ‘Ankylosing Spondylitis’, a fairly poorly understood autoimmune condition, and I was prescribed sulfasalazine. I don’t recognise my symptoms very well in descriptions of the disease – the onset wasn’t gradual at all and lower back wasn’t the main problem, groin/hips were much worse – but the drug seemed to work: symptoms disappeared in the next months. After a while I slowly stopped taking the sulfasalazine and have generally been fine.
I’m still not entirely satisfied with the diagnosis, and i can’t even be sure it was the sulfasalazine that sorted out the symptoms of whether it was just spontaneous remission / regression to the mean… either way, i had the one attack 10 years ago and since then have only had a couple of brief relapses that disappeared quickly with a combination of anti-inflammatories (etoricoxib) and sulfasalazine. Whatever it was is at least no longer bothering me and I haven’t taken any medication or had any issues for about 5 years now.
Before doing anything drastic… I would go see a chiropractor. Maybe you pinched a nerve in your back or hip on your original Birkenstocks expedition. All of your symptoms sound nerve related to me.
Shingles, or Chickenpox Strikes Again After Attaching Itself to Your Spinal Column, can be triggered by stress. Seems like an odd time given the stressful past, but that’s not always how it triggers.
I got the sudden weakness in the hands thing a month ago! I’m in Waterloo, Ontario. No other symptoms. Doctor says I’m fine, but keep it under observation, ordered some blood tests. So, lyme or behemoth, cause it’s spreading… I hope you make a full and quick recovery.
man that sounds hella like lyme to me–weird symptoms, u were healthy recently, this seems to have no cause or treatment? lmaoo same problem here my dude, healthy teenager suddenly mysteriously ill for no reason, bam it was lyme. you go out in the woods a lot? lyme is up and down the north american east coast, and you don’t need to have had a bullseye rash, either way rule it out because it’s not the first thing people test for and it can mess u up if it goes on long enough
blue,
The thing with “chronic lyme” though is that it’s most likely bogus. See for example https://www.sciencebasedmedicine.org/chronic-lyme-disease-another-negative-study/
@ Mika
An interesting read. I don’t think the concept of “Chronic Lyme” (phantom symptoms that show up years after successful treatment) should be confused with untreated latter stage Lyme though, which is real and horrible.
However, as fun as it is to play amateur internet physician, I have to assume that things like Lyme and Shingles were competently considered by the actual professionals in charge of Dr. Watt’s care. I think he does himself no favors by soliciting nightmare fuel from the internet and crackpots like myself.
I’m sorry for your current illness, but did you even have it out with Keith Gill?
Mtm,
No. Ehlers danlos and Marfans are both genetic conditions characterized by over flexible joints. People suffering from these diseases suffer chronic conditions, not acute epsiodes. Patients are often very tall and thin.
DA,
DA wrote: “I think he does himself no favors by soliciting nightmare fuel from the internet and crackpots like myself.”
I agree wholeheartedly (although obviously I mean no specific criticism of DA, crackpot or no) … and please don’t see a chiropractor or start eating tumeric or stop eating gluten. You don’t have Marfan’s or shingles and hemochromatosis would have been instantly considered had your hemoglobin been elevated. Lyme could be considered if you’ve been running through rural areas and all it takes is a special order blood test. I agree that there is such a thing as seronegative rheumatoid disease … there’s also transverse myelitis although I’d think your CRP would go up with that. I would order an MRI of your brain and neck pronto; I am glad you’re seeing a specialist soon — any worsening and I would also urge you to attend a university-based emergency department.
I think you already know that crowd-sourcing medical diagnoses is really not a safe way to go although I can’t imagine the anxiety not-knowing would cause. I wish you a billion wishes of luck. Email me if you want more information about how a physician approaches a case like yours.
Edit: the more I think about it, the more I think you should simply go to emerg. Honestly. Good luck. Lots and lots of people care about you.
@DA:It is best not to make assumptions on what has and hasn’t been considered. Even professionals make mistakes.
So the anti-vaxxers inform me.
I am glad that I could help; I’d really like to stress the fact that, as other people also noted, the absence of an inflammatory response at the routine biochemistry exams DOES NOT rule out inflammation as a possible cause. There are many auto immune diseases with a clear inflammatory mechanism, that do not alter WBC or PCR and yet responde well to antiinflammatory treatment. If some doctor tells you otherwise….look for someone else.
The good response to steroids would also support the notion that inflammation is involved in your symptoms at some level. The problem is that steroids improve A LOT of medical conditions, so that doesn’t reduce much the spectrum of possibilities
Moreover, I rechecked the reliability of serologic testing for Lyme disease (I found a review of July 2016): for disseminated (late) disease the sensitivity of a two tier assay, which is now standard nearly everywhere, is above 95 % in most studies. Really really good, so the issue of serologic reliability is relevant only in the case of acute infection (sensitiity around 40%)
Hi Peter. I’ve been reading your stories and blog for ten years now, but decided this was worth posting for today.
I don’t have an answer for your acute condition and it sounds absolutely awful. The only thing I can suggest would be what worked for us and has (via testimonial) worked for others. If nothing else, it could remove other contributing factors and bring to light the root cause of your illness.
My wife and I have always been healthy (much like your story), but we were having some perpetual health issues and a chronic need for Big Pharma’s wares. We both decided to try this Whole30 plan after some research and, within about 2 weeks, we were both symptom-free. By 6 weeks, during the reintroduction phase, I had discovered several dietary intolerances that were the cause of all my symptoms.
The overall diagnosis was “systemic inflammation” and, for us, we didn’t notice when one particular thing caused an acute reaction because it was like pouring a cup of fuel on a bonfire — our immune systems were already on overdrive so we couldn’t find the problem. By example, reintroducing small amounts of dairy (for me) causes an immediate and acute reaction, where before I barely noticed.
Your “absence of an inflammatory response” could be because your whole body is “on fire,” not because your system isn’t reacting to the test.
http://whole30.com/pdf-downloads/ — The base materials are completely free. If you’d like the book, let me know and I’ll ship it to you directly.
[…] The Salt Vampire’s Ugly Cousin – Point is, while I’ve never been any kind of athlete, I’ve been in pretty good shape … which if you go to the original Latin translates as we have no idea what causes this but the symptoms … […]
No medical advice, but I can provide home-baked cookies as a palliative treatment. Email me to arrange delivery.
I’m neither a doctor nor a man of great experience in mystery ailements (though arguably no one is), but I hope to wish you quick healing and little suffering.
Hey Peter, my advice would be to get the blood test to rule out Lyme disease. When I was in elementary school I got really sick and had some funky neurological symptoms (pain, fatigue, weakness, ect…) and the doctors could not figure out what was wrong with me. I never had any bites or rashes whatsoever so they never thought to check for Lyme disease. After a few months, and a bunch of tests, they decided to test me for Lyme disease anyway as a last ditch effort. My tests came back positive. The doctor was so surprised by this that they thought it might be a false positive and tested me again. My results came back positive again and after being treated for Lyme (lots of antibiotics if I remember correctly) I got better.
Long story short: even if you never saw a bite or rash on your skin, that doesn’t mean you can’t have Lyme disease.
Is Monday too early to get a status update?
Try to consult with other doctors, that way you’ll increase chances for correct diagnosis. Hope you’ll get better soon.
Hmmm well night sweats and the partially explained weight loss usually point towards a neoplastic or rheumatological cause. A distant 3rd on my differential is some sort of global neurological condition like MS, but you lack a lot of the red flags.
With regards to your hands and wrists, are any specific fingers or areas sore/weaker/numb? Any particular motions you find your wrists are weakest with, and do you have any feeling of “tight and/or thick skin”? Also, any dry eyes/mouth?
Antisynthetase syndrome, a cousin of dermatomyositis checks most of your symptoms but generally presents with a rash. Its one of those odd connective tissue diseases. Your cardiac complaints make me wonder about pericarditis and pulmonary hypertension, both of which are common manifestations of connective tissue disease.
If your doctor is game for shotgun medicine a CK, ANA, ESR (unclear if it was already ordered), and a CBCD would all be useful. Try taking serial temperatures thoughout the next couple days and see if you find any trends.
Tall, caucasian male in mid 50’s makes a new rheumatological diagnosis less likely but not unheard of. Fingers crossed its not neoplastic but a PET scan is the gold standard test for that.
Hope you get better soon Peter
I mostly agree with you Reid, infacts I had hinted at anti synthetase syndrome myself. I wouldn’t consider your suggestion a shotgun approach; on the contrary, I would extend immunologic exams a bit further. But the first step, IMHO, before looking into etiology, would be to have an accurate diagnosis at the level of the anatomy, I mean to enstablish wheter there is a real muscle or nerve involvement. That’s why personally I’d start with an EMG. It would be better to do it when symptoms (like weakness) are at their peak.
I am a 55yo former triathlete who experienced a sudden onset of crippling symptoms like yours a couple of years ago. In the fall I was riding centuries and hillclimbs, in the winter I was house-bound and almost bed-ridden. No physicians or specialists could diagnose it. Ultimately it turned out to be a muscular disorder, sometimes called myofascial pain syndrome, which started in the piriformis muscle, affected major nerves, then other muscles in a long chain of cause-consequence that has taken a long time to understand and unwind.
This author has a good lay overview, if it rings true let me know and I could give you other references.
https://www.washingtonpost.com/national/health-science/myofascial-pain-syndrome-often-leaves-doctors-baffled-and-patients-untreated/2013/06/17/1afb5766-6c86-11e2-8740-9b58f43c191a_story.html
Most medical practitioners, even physical therapists, don’t understand muscle health at all, just weakness or injury. Do not follow any standard physical therapy protocol for strengthening/stretching unless the practitioner understands what myofascial “trigger points” are and how they should be treated.
Lots of odd symptoms can be caused by simple muscular disorder. My night sweats were caused by sympathetic nervous system response to pudendal nerve impingement from piriformis muscle. Ativan helped manage it initially, then I learned to recognize and deal with it, then it stopped once the muscle and nerve healed.
Women’s health practitioners tend to be better informed. Often the disorder isn’t noticed/diagnosed until it hits the pelvic floor, which was my experience.
And the testicle thing was the worst. Women’s health people couldn’t help much with that, for some reason. Many of the few men with myofascial problems in the pelvic floor end up being misdiagnosed in urology for years on end, but it was just dysfunctional muscle pulling too hard on the wrong parts.
Sending posi-thots for your speedy and permanent recovery.
I bet if you took PCP those symptoms would clear right up.
Speaking of il Egosurfing, “… The next release is scheduled for late October by Canadian Peter Watts.”
Italian something something Silverberg.
No rash means not Morgellons I guess, which I refer to as the stigmata disease but otherwise has similar symptoms to Lyme and which for years pathologists thought was purely psychosomatic or just plain lying for attention. Would’ve been more ironic if you had a rash resembling St. Augustine or something.
Mogellons.
My general pointless advice would be to reach for the drugs – aspirin for general inflammation, codeine for the pain, VitD3 because it is the only supplement I have ever taken that actually did something I could feel, and maybe a tab of modafinil to perk you up a bit. Beyond that, as my doctor told me after I got temporary paralysis in my left hand and an MRI scan: “Your neck’s knackered”.
The fluoroquinolone antibiotics you were on are known to do all sorts of nasty stuff to the thyroid, among other things, and they can deplete the body fairly quickly of vital nutrients that may be hard to replace in some regions.
Things to check: T3 & T4, TSH, reverse T3 & T4 (the entire lot for the thyroid).
More things to check: zinc RBC, serum iodine, selenium plasma, full Ca/Mg/K etc. electrolyte panel.
Even more things to check: C-peptide test, HbA1c test.
If you can get it reliably done: chromium III screen (not chromium VI).
My last best guesses: genetic screening for glycogen storage disorders, general SNP screening (23andMe may help, I’ve never tried it), etc.
They probably checked you for anaemia (including drug-induced transient varieties), so if nothing showed up for that, you can rule out certain interactions with antibiotics. Just to be safe, if you’re on presently on Septra, Bactrim, or Gantanol, remind your physician to check for further interactions.
Some of these tests may not be Canadian formulary or supported by your health scheme, but at least they would be better than blindly shooting into the dark. I’d almost suggest being driven down to the US for a walk-in lab test if all else fails, but I know how much you love Talking to Americans (With Badges).
A thing to keep in mind: couch potatoes can go for decades without depleting essential nutrients, but someone who pushes himself to the limit with exercise may experience the effects of nutritional imbalances possibly as a sudden-onset syndrome of some type, which is precisely what you have described.
If you are presently taking potassium citrate, large doses of B vitamins, large doses of vitamin D3, are eating a lot of nightshade plants (source of calcitriol), or are regularly consuming dietary pseudo-blood thinners (turmeric, cinnamon, l-arginine, etc.), the cumulative effects may be creeping up on you, but I’d suspect another nutritional or functional cause that’s allowing any of these to make things worse. Mention any of this to your physician and see if there’s a possible correlation.
That’s all I have to suggest.
More thorough tests and more detailed diagnoses, including what’s not in effect, are what’s left as options right now.
BTW, do more to make your physicians work for a bloody living … 🙂
(Last-moment edit: I just remembered you are in coastal BC — your region’s soils are low in selenium, which is one of the things I’ve mentioned you should have checked. Pushing yourself after long-term exposure to fluoroquinolones might push your selenium levels low enough that all sorts of weird stuff would happen.)
Post-Alley,
My first inclination s to channel Monty Python at you (“Who are you, who are so learned in the ways of science?”), but my second is, Wait: fluoroquinolone antibiotics? When was I on those? When did I say I was? Is there maybe another Peter Watts you’re confusing me with?
(Another Peter Watts who isn’t actually allowed to enter the US no matter how he feels about badges, and who used to live in coastal BC— I’ve been in Toronto since ’98.)
Dr Watts, there are quite a lot of fluroquinolones, though the main one is Cipro. One might reasonably presume that Cipro might have been one of the resorts during your bout of necrotizing fasciitis.
There appear to be some rather unexpected problems in the knock-on from floroquinolones and quinolones such as Ceclor. Neither of these are first-line antibiotics but for something like NF where the malady is very fast moving and there’s no time to waste before escalation, such non-first-line antibiotics might actually be the first things they try.
About those problems (emphasis mine):
As mentioned elsewhere, sometimes a tendon or bit of cartilage can get a bit out of place and in most cases you’d never notice it. But with the wrong sort of unusual motion or stress, such as walking with Birkenstocks, knock-on effects pile up down the line and little problems become large pains. And who would think to blame a pulled groin-stabilizing muscle on antibiotics, or blame a brief pancreas flare-up on a pulled groin muscle, or an apparent immune-system freak-out on a brief pancreas flare-up?
I’m not saying this is what happened but I’ve heard of comparable “…and the kingdom fell/all for the want of a horse shoe nail” type stuff. If this were the case, more or less, knowing the cause still can’t help much with treatment, other than to suggest perhaps one should in the future avoid Ceclor and Cipro if you can, which you probably already knew. Cheers and hope you’re feeling better,