Having said that, of late my physical ailments have been giving me a pretty good trouncing and I’ve started to feel as though I should probably fill everyone in on the details of my puzzling illness, especially since my increasingly feeling like crap is definitely impacting my ability to keep up with regular blogging activities, particularly so when it comes to responding to the many heartfelt comments, messages, and emails sent by the readers I value so much. I’ve always striven to be extremely open and honest on these pages, and it seems almost disingenuous for me to not directly address my physical state when feeling like crud is taking up so much of my damned time.
I’ve often referred to my condition as “complicated” or “atypical” without going into too many details or explaining exactly what I mean. So, here’s what’s been going on with me physically, in all its glory. My body seems to be under attack by a three-headed beast, a triple whammy that these days has me wondering just who the hell I’ve pissed off.
First up there’s my neurologic illness, which just keeps whacking away at me, and of which I’ve written about most often on these pages. My preferred name of this slice of my physical mess is “creeping paralysis”, which is actually an archaic moniker for multiple sclerosis and other progressive neurologic diseases from back in the 19th century. Although I present symptomatically very much like a patient with progressive MS, many of the doctors I’ve seen have been hesitant to definitively label me as having multiple sclerosis since almost all of my test results defy the accepted diagnostic criteria for the disease.
Foremost among the odd aspects of my illness is the fact that I’ve only ever had two central nervous system lesions, neither of which have ever shown any signs of active inflammation: a tiny one in my brain and a much larger, more invasive and troublesome monster located at the very top of my cervical spine, at the critical juncture between my spine and brainstem. I’ve been told that this lesion is so invasive that it’s almost like having my head cut off.
These two lesions haven’t changed one bit or been joined by any others in the 12 years since I first exhibited the telltale limp that eventually led to my initial diagnosis, yet my physical condition has gone straight downhill ever since. In fact, this duo of destruction even show up fully formed on a set of MRIs done to get a look at my pituitary gland back in the year 2000, a full three years before I started limping. At the time these images were first made these lesions were completely overlooked, until they were discovered with much surprise by the doctors at the National Institutes Of Health while they were going over every MRI image I’d ever had done as part of a comprehensive effort to determine just what it is that ails me, a goal neither they nor any other physician has ever able to satisfactorily complete. So, I’m left with a diagnosis of “atypical PPMS”, and I’ve come to grips with this by insisting that in my case those initials stand for the “Peculiar Paralysis of Marc Stecker”.
Whatever you want to call it, my neurologic illness has been anything but kind. It’s left my right side almost completely useless, the muscles in my hand, arm, and leg withered and twisted. Most of the time my right hand is curled into an emaciated claw, an appendage that would look more at home on a mummy than on a living human being. My right side is becoming increasingly impacted as well, getting weaker and less able almost by the day. At times it seems I can just about watch the muscles in my left arm and hand melt away, and with them any remaining semblance of normalcy in my life. Throw in most of the other goodies that come with neurologic illness, such as spasticity, numbness, tingling, immense heat intolerance, and bladder and bowel issues, and the toll has been staggering.
But that’s but one tine of a three-pronged assault on my physical well-being. I also have a wide range of endocrine problems, most likely due to a severely dysfunctional pituitary gland. The pituitary is the human body’s master gland, sending out chemical signals that regulate hormone production in all of the other glands that make up the endocrine system. Because my pituitary is on the fritz – likely because of some kind of autoimmune attack – I experience a wide variety of hormonal deficiencies, some of which if left unchecked can be just as debilitating as my neurologic issues. Among other hormonal abnormalities, I suffer from low testosterone, low cortisol, and low thyroid levels. Although I take various supplements and medicines in an attempt to make up for these deficits, my endocrine system is balanced on such a razor’s edge that if anything goes awry my overall symptoms often get magnified tenfold and I’m left in a vortex of physical despair.
Lately it seems that my thyroid levels have gone completely out of whack, leaving me tremendously weak and fatigued, and overall feeling severely unwell. I’ve lost about 25 pounds in the last three or four months, most likely due to endocrine issues and hopefully not because of something more ominous. Endocrine abnormalities can often result in muscle weakness and even muscle wasting, and could account for the fevers that attack me nightly, making it difficult to figure out which symptoms are caused by my neurologic stuff and which might be attributed to my hormonal problems or some as yet undiscovered culprit.
The complicated interplay of my progressing neurologic illness and increasingly abnormal endocrine system makes me an extremely difficult to treat patient, a puzzling jumble that regularly leaves my doctors at a loss, though I give them lots of credit for working hard at trying to figure me out. I often have completely unexpected and sometimes disastrous reactions to medications, and even minor surgical procedures like biopsies or oral surgery can leave me flat on my back for weeks because my hormonal deficiencies leave my body with very little capacity to heal itself. My endocrine issues are insidious, always at work just below the surface, hiding behind and sometimes exacerbating the symptoms caused by my neurologic illness. This forces my physicians to treat me with kid gloves, always aware of the fact that my strange brew of ailments can sometimes turn typically benign treatments into nasty surprises.
The last but definitely not least of my medical challenges is the constant and often excruciating pain inflicted on me by a condition called avascular necrosis, which has attacked my shoulders and hips. Avascular necrosis (AVN, sometimes also referred to as osteonecrosis) is a disorder that causes the bones in afflicted joints to quite literally die, leading them to eventually crumble and break. Although the precise cause of AVN is not understood, the condition is known to be a very rare side effect of steroid use, and it first manifested in me about six months after I had gone through a 10 day course of IV steroids meant to curtail my rampaging neurologic symptoms back in 2006. It’s now thought that I may have been more susceptible to developing AVN because of all of my endocrine issues – the extent of which we weren’t aware of at the time – and the fact that my body was chronically deficient of the natural steroids a healthy endocrine system produces.
These days, roughly 8 years after those ill-fated steroid treatments, I’m left with the equivalent of two broken hips and two broken shoulders, and all of the attendant excruciating pain that goes along with them. I’m pretty good with words, but I’m at a loss to convey just how agonizing this condition can be. On really bad days, which of late have been occurring with increasing frequency, whenever I try to stand or otherwise put weight on my hips the bones beneath my skin can be heard loudly and horrifically popping, cracking, and crunching as they collapse into each other, sounds often accompanied by my own involuntary yelps and howls. My wife Karen often bears witness to these horrific auditory fireworks, and the look of dismay that shows on her face is heartbreaking.
Chronic, intense pain subverts every aspect of life and commands absolute attention, shackling its victims to moments of utter despair. Through the years I’ve learned at times to affect an almost dispassionate demeanor about my neurologic and endocrine problems, temporarily divorcing myself from the situation and taking on the role of observer. The ghastly pain caused by the AVN allows no such contrivances. I now fully understand why they say torture often doesn’t work during interrogations; there are moments in every day when I would readily admit to killing John F. Kennedy if it would just make the pain stop for even just a few moments.
Avascular necrosis is the leading cause of hip replacement in the United States. Unfortunately, due to my neurologic and endocrine issues I’m not a candidate for surgery as I very well might not survive the procedure, and even if I did I wouldn’t be able to do the requisite rehabilitation afterwards. For many years a powerful anti-inflammatory drug called diclofenac helped keep my pain levels tolerable, but over the last several months it has been discovered that the drug was degrading my kidney function so I was ordered to stop taking it. I’ve tried other anti-inflammatory compounds in its place, but most seem be as effective as sugar pills. I’ve been on and off of a variety of powerful painkillers, from oxycodone to Dilaudid to methadone, but even these potent narcotics don’t help all that much and I despise the way they cloud my mind. I see a very sharp and creative pain management doctor, but there’s only so much she can do. The bottom line is I must try to get through my days with two broken hips and two broken shoulders, in addition to my omnipresent and progressive neurologic and endocrine problems.
So, there you have it, my triple whammy, a triumvirate of infirmities any one of which could be absolutely incapacitating in its own right. The fact that I suffer from all three simultaneously and that they form a three-headed beast that magnifies the power of each sometimes leaves me wondering if I might have somehow been hexed, the victim of some ancient curse. I do my best not to indulge in too much self-pity and try to remain as productive as possible, even if lately that hasn’t been very productive at all. At times, though, the reality of the situation crashes through all of my defenses and leaves me shaking my head, wondering just what the hell happened.
Still, each day the sun rises anew, and as long as I’m on this side of the grass I figure I might as well get on with it as best I can. I’ve always vowed that if these things take me down they’ll take me down swinging, but with so many targets to swing at it’s hard to know precisely where to aim. Especially when taking a swing with a weakened, emaciated, and agonized arm doesn’t amount to all that formidable an attack.
I can still spit with the best of them, though, and if that’s going to be the only weapon left to me, then spit I will. Ha!
On a much more uplifting note, the healthcare website Healthline.com has named Wheelchair Kamikaze one of 2015’s best MS blogs. I thank them profusely, and urge readers to click on the badge below and check out some of the other blogs that made the list. Lots of great stuff being put out by MS bloggers these days , each with their own unique take on life with multiple sclerosis…
Marc my heart goes out to you and karen. You are courageous to give voice to this torture. Your mind soars unencumbered. Is the monster Ghidorah? XO sharonReplyDelete
Hey Sharon, thanks for the kind words. Not so sure about the unencumbered mind, though. Sometimes it seems pretty cucumbered. Don't worry, I'm not sure what that means either.Delete
And yes, the monster is King Ghidorah, one of Godzilla's most dangerous nemeses. Thanks for the hugs and kisses, and please send my affections to Kevin. And yes, I know I owe him a call…
Marc, so sorry for what you're going through, so glad you're willing to share your journey with us. I know it's not your intention, but the fact that you find a way to survive your challenges inspires others to endure their own challenges. "If Marc can deal with all he's dealing with, I guess I can make it through the day."ReplyDelete
Thanks Mitch, I appreciate the sentiments. Sure wish I had been able to find some other way to be inspirational, though. You're pretty good in the inspirational department yourself, buddy. Neither of us had much choice in the matter, did we? If we did, then we're both pretty fracking stupid…Delete
Marc, I can only imagine the level of torture you go through each second. I have SPMS and ulcerative colitis; but the numerous herniated disks in my back often seem to win out in any contest for making my life a living hell. Surgery is not really an option for me either. Your level of generosity and grace in battle rivals any soldier on the front lines. This is a war none of us ever imagined when we were younger and though we will likely never meet, we are all comrades in arms. Wishing you a brief reprieve from the fighting...ReplyDelete
Hi Sandy, hate to hear that you to have to deal with chronic pain. Like you say, the pain does seem to trump all of the other crap we need to fight. I think my quality of life would be at least 80% better if it weren't for the pain. I'm very sorry that you probably understand exactly what I mean. Hoping that you can catch a few breaks, too…Delete
Marc, First thing that comes to my little listed mind is "but Mrs. Lincoln did you enjoy the show.."ReplyDelete
I cannot tell you how much I appreciate your posts and how much I admire your ability to verbalize all of this crap.
I know that each of our MS journeys is different and you my friend seem to have got at least a quadruple share of this MS bullshit.
I wish I have something to offer except hang in there but keep on spittin!
Thanks Tom, I certainly do intend to keep on spitting. Spitting venom, even, if I can learn that trick from my nearest friendly neighborhood cobra. We all have our crosses to bear, so to speak, and this certainly isn't a contest to see who can bear the most suffering. We all do our best to help each other shoulder the load, though. I appreciate your comments…Delete
Hang tough, brother. You are widely loved.ReplyDelete
Your kind words are appreciated, Max. Thanks…Delete
Repeating your own words, "The gods must be crazy".ReplyDelete
Crazy? I don't think that goes nearly far enough! Demented, maybe? I would go further, but I don't want to offend the faithful among us… Actually, I prefer to imagine that the universe has a really sick sense of humor, and that somewhere there is a cluster of cosmic pranksters having a good guffaw at my expense. And that someday I'll get to meet and then kick the living shit out of them…Delete
I really, really admire you!! Wishing you all the best!ReplyDelete
Thanks for your admiration, but really, it's undeserved. I didn't ask for this, and in actuality all I'm doing is just trying to get through the days, one at a time. This blog is an important part of that process, and the fact that it may help others get through their days, even a little bit, is astounding and immensely gratifying. So a big thanks to everybody who bothers to read these words…Delete
We all love and need you Marc. I check each day to see if you have written something for us. Hugs for you and Karen.ReplyDelete
Thank you so much. I wish I had the wherewithal to write and post more often, but like everybody else, I'm just doing the best that I can. Karen appreciates all of the kind words, too…Delete
Hello Marc I empathize with you and I am so sorry you are suffering. I have PPMS. I suffer with FM, Interstitial cystitis, tinnitus and numb tongue. The fact that I suddenly loose weight, pale translucent skin and I hear you look great. I recently had ring worm from a pup I rescued. Prior to that I had scabies from a seniors home. Prior to that I had a eye infection only children get. Now I do practice good hygiene but my immune system sucks. Recently, I was excluded a trip to Greece, which was planned secretly by my husband but that is a whole other storey and a whole other article. Pain is awful but the losses of abilities to do are so psychological damaging. I admire your pernicious drive and I wish you well.ReplyDelete
Yes, the physical trials are distressing, but the real killers are all of the activities that we've been forced to give up, even ones that seemed mundane and even burdensome back in the day. If only I could take out the garbage again, or sit behind the wheel of a car stuck in traffic. It's important to keep these things in mind, since we must try to appreciate the actions that are still mundane to us that might still be lost… Now, isn't that a cheerful thought?Delete
Hi everyone Just thought I would let you all know I sent separation papers to my husband in Greece, after being kicked to the curb. I still have PPMS! And there are other issues but I felt you can not treat people like that. It would be interesting to do a poll…………..send papers or not? How many marriages end because our significant other can not cope. I care gave my husband during his cancer treatment for melanoma. I too suffer from chronic severe pain. Certainly affects my mood but I do the best I can with very little support. I still attempt to do the mundane and find joy in simple activities. TAKE CARE.Delete
As a person suffering from progressively worse disability, I am so sick of websites that show happy, smiling, able-bodied people with MS who are running marathons because "I have MS but it doesn't have me!" As I sit homebound, surfing the web, questioning if I can drag myself and my walker to the bathroom, I wonder: "where's the website that talks about me and my experience?" The answer, always, is Wheelchair Kamakazie. Thank you having the honesty to talk about this stuff.ReplyDelete
Great good golly, how I hate the expression "I have MS but it doesn't have me!" Why on earth is the emphasis put on those who are least impacted by MS, when so many have been devastated by the disease? Is that reality to distressing for public consumption? Well, if it is, tough shit. Happy talk and magical thinking isn't going to get this thing cured, but showing the worst of what this disease can do might just emphasize the importance of making real strides against this scourge, not the baby steps that the powers that be seem to be content with. But I'm preaching to the choir, I know. The face of MS shouldn't be some bright eyed marathon runner, but some poor soul stuck in a wheelchair watching their former life recede into the fog. Wouldn't want to get anybody upset, though…Delete
Hello Marc, I am very sad reading you are suffering so much.ReplyDelete
Have you read about high dose vitamin D treatment? Seems to help a lot of people with all form of MS.
There are few doctors using this protocol, but I know they are very kind and you can contact them with email.
I wish you all the best.
Hi Steve, thanks for the high dose vitamin D recommendation. I'll have to speak to my doctors about this. I do know that you have to be careful with vitamin D, though, because it is possible to take too much. There have been some very good results seen with high-dose D biotin, though. Might this be what you are referring to? I've also heard of some doctors giving their patients intravenous vitamin C as an MS treatment. Don't know much about that one, though…Delete
Marc, I think the above is referring to Dr. Cicero Coimbra of Sao Paulo Brazil. He is a Neurologist who claims to have had dramatic success treating MS with massive doses of vitamin D. There are now several doctors in South America who are now following this protocol. Coimbra has a few Youtube lectures out there.Delete
I second the vitamin D recommendation. First, find out what your serum level is. Assuming it's <50 nmol/L (as it is for most people who don't supplement) find a way to take it up as soon as possible. (But don't go as high as >125 nmol/L / >50 ng/mL because that's "associated with potential adverse effects," according to NIH.)Delete
Note, I don't think much of recommended daily dose often suggested. I've been taking 6,000 iu daily for 3 years and am now finally in a place where I can ease off a bit. And, bearing in mind the maddening uncertainty associated with this fucking disease) I think it's helped.
I am so sorry to hear how hard it's getting. I admire the way you cope.
Hi Nicola, thanks for the advice. I see a naturopath who is "in charge" of all of my supplements, and vitamin D is right there at the top of the list. Lately, for whatever reason, my vitamin D levels have been hitting lower, so I need to up my dosage. Thanks for the reminder…Delete
COINCIDO CON ENJOYING THE RIDE, SOS UN CAPO!!!!!!, NO TE ENTREGUES CORAZÓN LIBRE!!!, HASTA LA VICTORIA HERMANO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!ReplyDelete
Muchas gracias, mi amigo…Delete
AArgh,,,you need some decent pain meds! This country is barbaric in that regard. Would Colorado have anything to offer that would work for you?ReplyDelete
I've tried the "Colorado alternative", but it's difficult to get the right medicinal strains here in NYC. Haven't seen much benefit from the stuff I have tried, though…Delete
Marc, it is hard to read your post without weeping, a reaction which of course pales in comparison with the metaphorical and perhaps literal weeping you experience as you live through this train wreck of conditions. I am sorry I have not responded before, and it is because I was swept in by the Mad Men Marathon, which I watched practically around the clock. Since parts of it coincided with my childhood, it was a reminder of what life in general was like before I even knew about something called MS. But, viewing the marathon was also a reminder that, given what some (Woody Allen?) call the accidental human existence, enjoying my day and overlooking that Life may make no sense is sometimes the best thing one can do. At least, it may help one retain sanity and find value in the life one does have. I hope you can find enough joy creators to help you live past the pain, loss, and fears. But, what am I saying? You are a giant in figuring out how to thrive despite the bad hand dealt you.ReplyDelete
I too am/was a big fan of Mad Men. We certainly do need our diversions, don't we? Unfortunately, sometimes even though the versions aren't all that diverting, as I find myself sometimes watching TV and mentally ticking off all of the things that the characters are doing that I no longer can. How's that for self torture? There is still enough going on to keep me interested, though, especially as I try to Chase down leads as to just what the heck might be wrong with me, trying to find a common thread that links all of my various and sundry disorders. A hobby I wouldn't wish on anybody…Delete
ms.net recently republished a post from a half dozen years ago that ended “Still, one day follows another, and we learn to suck it up and force or fake our way through. It’s incredible what a person can get used to, isn’t it?”ReplyDelete
Keep pushing that limit best you can. Thanks for the head dump, and the spirit. Also glad to read that you could possibly, on a decent day, still enjoy a blast up an avenue or two in a rental. Perhaps shifting some kind of Teutonic manumatic from shotgun?
Hey Tom, thanks for your comments. Reading some of my old posts now republished on MS.net almost like reading something written by another person. I'm very grateful to those folks for resurrecting so many of my old blog posts, which were just wasting away in the ether. And not to repeat myself, but it is incredible what people can get used to.Delete
The way my hips are hurting, not sure a ride in a tight little sports car would do me much good. Then again, it might do me a world of good. As for operating some kind of passenger side TiptTronic, now there's something to think about…
Couple hours of notching a Porsche Cayenne suv up and down the gears can’t possibly be a bad thing, in this or any universe! Standing offer, while I still can at the rental counter anyways...Delete
All I can say is -- WELL, THIS REALLY SUCKS!!!!!!!ReplyDelete
Just hope it helps to know - we know exactly how you feel, unfortunately.
Hey, Dee, you summed up my sentiments exactly. This really does suck, and I'm sorry that so many people can relate. As Hilda said, above, the gods are gone crazy…Delete
Hi Marc. Thanks for sharing. The disease has been pretty tame as far as "attacks" and inflammation but 20 years later the nerves left exposed have slowly degraded and the underused muscles wasting away. I call it a quality attack. One and done.ReplyDelete
Steve, sounds like a classic case of primary progressive MS, if there is such a thing. Sorry to hear that you are a fellow member of the "muscle wasting" club. Talk about a club that nobody would want to gain entry into… I'd much rather join the Shriners, even if I think the hats are silly…Delete
Marc good to hear what has worked , and what has not. My neurologist saysDelete
Copaxone (Glatiramer acetate), is the best thing out there, with least amount of side effects. Can you elaborate whats worked or not?
. My disease keeps progressing, botox being injected to ease muscle tightness in both legs and neck, and a array of other drugs, including medical canbinoids. But if they title it "Progressive", there is little drugs available to use.
I keep looking for things to ask.
Hi Marc. Thanks for sharing. Between MS and Varicella Encephylitis (which caused seizures) I have been pretty down lately. Reading your posts, though, reminds me that soldiering on is the only course of action. My best to you.Delete
My best to you, too. It completely sucks that any of us have to deal with this crap, but knowing that there are people out there who can completely understand somehow makes getting through the day just a little bit easier. Hang tough…Delete
Joey, unfortunately there really is very little out there for progressive MS. Copaxone is worth a shot, as it seemed to have some effect on a subset of progressive MSers when it was in trials way back when. Not enough of an effect to get an FDA approval, but the scientists thought they saw some signs of benefit. You might also ask your Dr. about Rituxan, a drug that is infused intravenously that has also shown some effect on a subset of people with progressive MS. Another possible option is intrathecal methotrexate (just do a search for it in the search bar in the upper left corner of this blog), but it might be hard for you to convince your doctor to go this route. You could try printing out some of the research I linked to in the post I wrote about it, and then take it to your doctor and see what he has to say… Wishing you the best…Delete
Multibility, sending my best to you, too., We soldier on, even if we are not very much good at marching…Delete
My friend, as I sit here withering away from my own PPMS, I weep for you. I'm terribly sorry that your misery helps me to feel better. Realizing that as bad as I have it, there are those who are worse off than I (how is THAT even possible??) I can still spit also, so cheers!! I love your video adventures most, so I pray for you, that you will feel well enough to get outside and stroll around on the streets of NY, I love to see the people scatter as you go zooming. Thank you for sharing and for being real.ReplyDelete
Hey, thanks for your nice words. If nothing else, at least I can be real. Trust me, you won't be seeing many rainbows and unicorns on this blog. Glad you enjoy the videos, but I haven't done one in about four years. They are very time intensive, and as you might imagine, I don't get around these days nearly as much as I used to. Funny, one of my favorite songs is the old jazz classic "Don't Get around Much Anymore", but I never imagined that it would one day have the meaning to me that it's now taken on. Life.Delete
Thank you so much for your blog. You write so well. I wish you could write something about what friends and colleagues can do for people with MS. I am reading so much, but still it`s hard to know. I know everyone is different and there is not one answere. To ask the person would maybe be a good idea, but if the person just want to manage on his own, not be a problem to everyone....what do I do?ReplyDelete
Thanks for your kind words about my writing. As far as what friends and colleagues can do for people with MS, I think that's something that needs to be tackled on a case-by-case basis. It also depends on who's doing the asking. It would be difficult for me to write such an essay, since I'm on the receiving rather than giving end of helping most of the time. Personally, early on in my disease course when I was still relatively able I preferred to try to do things on my own. These days, given the toll the disease has taken, I'm quite grateful for anybody offering help, even total strangers. Took me a while to get to that point, but the way I look at it now is that I'm giving somebody the chance to do their good deed for the day, and to feel good about themselves for a while. It's a win-win situation…Delete
Thank you for your reply. And I so totaly agree with what you write. It is absolutely a win-win situation in so many ways! And I understand that there is not on answere to how to help. I am just afride that I am asking too much and too many times. But I guess will just find out as we go along.Delete
Wish you all the best!!
You fucking rock!
I love reading your stuff. Unfortunately I read your posts when I'm at my lowest....
I have RRMS for about 13 years, probably now SPMS. It sounds like your wife is it at your back. Mine is too,but I think it's killing her. Any ideas on how to keep her sane?
Thanks for the kudos, but I'm sorry that you find yourself in a similar predicament. I wish I had some answers regarding how to keep our spouses sane, sometimes I think the disease is rougher on them than it is on us. And believe me, I know it's no picnic on us. Just be kind and express your gratitude, try to let her know how much her just being there means. It's awfully easy to get self obsessed while in the grip of this disease, it's something I try to work on every day, albeit quite often not all that successfully…Delete
I've been lurking for about a year and I just want to tell you that I love your blog so much. You write beautifully. I'd chop off all three of those monster heads if I could.ReplyDelete
Hi, and welcome to the land of the non-lurkers. Much gratitude for your appreciation of my blog and skills at putting words together, such as they are. It sure would be great if you could figure out a way to lop off the multiple noggins of my three-headed beast, but your words of support are the next best thing. Thanks.Delete