Why My Wife and I Believe Fibromyalgia and Multiple Sclerosis are One and the Same
76Montel Williams
It's a bold statement for two folks who aren't even doctors, saying that multiple sclerosis (MS) is the same thing as fibromyalgia. How did we even come up with such a farfetched, Looney Tunes idea in the first place, ennyhoo?
In a word--okay, two words: Montel Williams.
A bit of backstory: Pam was diagnosed with fibromyalgia in 1998. Back then, at least in South Dakota (where we lived at the time), few people--including doctors--knew anything about the disease. We'd heard of it, done a little research on our own, and knew she had it. However, her regular physician wasn't willing to admit in so many words that he agreed with us.
It was only when we left the state and pulled a set of records from the clinic on our way out that we found an entry in her medical file:
"...presents with the classic symptoms of fibromyalgia."
In 2004, Climbing Higher by Montel Williams (with Lawrence Grobel) was published. I picked up our copy in February of 2011 at Hastings Bookstore, On Sale, $1.99 in the used book rack. From the first page, one thing was startlingly obvious: Pam's experience with fibromyalgia and Montel's experience with multiple sclerosis ran parallel like the two rails on a single set of railroad tracks.
The only difference was intensity, the sheer degree of pure damage each individual has to deal with on a daily basis. Which led us to conclude--we couldn't avoid concluding--that fibromyalgia is nothing but "baby MS", a milder yet nonetheless debilitating form of the crippler/killer known worldwide by those two simple letters: MS.
Comparison Points
How long will it take the medical professionals to catch on to this...if they ever do? No clue, folks. But hey, here at the Border Fort, you're seeing a brilliant combination at work.
That is, a science fiction writer with a "sci fi mind" used to making deductive/inductive/seductive leaps (that would be me) and a onetime pharmacist with fibromyalgia powered by a lightning fast, nuclear powered, damaged-yet-still-awesome brain (i.e. Pam). You can't expect a little thing like the A.M.A. to compete with that!
All righty, then! Enough chitchat. Time to list a few comparison points between Pam (as we've lived her fibromyalgia) and Montel (as he's chronicled his multiple sclerosis). Just one last caveat before we get started: This list is a tiny fraction of the overall whole. We could run this thing out for many thousands of words.
You wouldn't read the whole thing then, though.
Here we go:
MONTEL and PAM : SIMILARITIES
1. In the beginning, a lot of doctors felt Pam was making it up, a hypochondriac, not in pain at all, just a great big faking phony. Same with Montel. Be it fibro (as we usually refer to fibromyalgia) or MS, a lot of the symptoms are invisible to the naked eye of an outside observer.
if you're dealing with lifetime athletes who are used to sucking it up, use it or lose it, that's especially true. Pam and Montel are both lifetime athletes.
2. PAIN!! That's the number one hallmark of both diseases. In Montel's case, there were times he literally could not move because the pain was so intense. Pam's pain levels, in the early years before she taught herself to function through pain levels most of us can't even imagine, was--well, let's put it this way: For one 18-month period in 1998 and 1999, I had to carry her to the car and even to the bathroom much of the time. PAIN!!
3. Cyclical nature. Both fibromyalgia and multiple sclerosis tend to flare up, knock the dickens out of the sufferer, and then recede again...for a while. The process is repeated endlessly, sometimes (but not always) leaving obvious additional degredation behind after an "episode". When Pam wakes up in the knowledge that she's "in for it" once again, all she has to tell me is, "Fibro Flare"...and I get the picture.
4. Balance and coordination problems. Montel stumbles into things, falls, and walks in a circle to his left if he doesn't consciously counter the tendency. Pam has fallen more times than either of us can count, has given herself a black eye by walking into a doorframe, and must be ever aware of paying attention to balance if she's to remain upright.
5. Brain demyelination. This is the keystone for this entire hub. In our brains, the nerves are sheathed in a substance called myelin, precisely as electrical wires are covered with insulation. "Multiple sclerosis" translates as "many scars", i.e. numerous places where the myelin (insulation) has been scraped or scarred or in some way...removed...from the underlying nerve.
Which--you got it--shorts out the brain to one degree or another.
Montel's MS diagnosis was confirmed by an MRI scan which showed scarring in his brain and his spinal cord. Pam had her MRI in 2003. I watched the technicians as their eyes went wide when they first saw her brain's "white patches" coming up on the images they were monitoring. It was obvious they'd thought she "looked too good" to have actual damage like that.
Wrong.
Bottom line: Pam and I've discussed this in depth. If our intuitive conclusions are correct, a complete MRI scan of a fibromyalgia sufferer would, in all likelihood, reveal some degree of brain demyelination. Or maybe not; it's possible the brain lesions are present but still too small for even our highest scanning technology to pick up in the beginning.
Of course, that's not likely to be either proven or disproven any time soon. MRI scans are not at present a diagnostic tool of choice for most cases of suspected fibromyalgia.
But we're onto something, and we know it.
UPDATE, MARCH 10, 2011
A special note of thanks to fellow Hubber MsDee for mentioning the existence of a YouTube video in which Stanford University's progress toward understanding and treating fibromyalgia is discussed. The video turned out to be so good that it simply had to be included here.
Stanford University Scientists Study Fibromyalgia
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Thanks, Pop. We're glad we have each other.
You're absolutely correct: Quite a few doctors still don't believe fibromyalgia exists. When she had the MRI done in 2003, her regular physician didn't even believe the radiologist who read the MRI had interpreted the scan results correctly!
I just read this hub aloud to Pam, a great way to (a) get her opinion of the piece and (b) eliminate every last typo (caught 3 of them in this one). She tells me she'd seen that on TV recently--the info that migraine sufferers have white patches, too. I had NOT known about it, though it's hardly surprising.
Something else just triggered in my "sci fi mind", though. It's been known for some time that women get fibromyalgia nine times more often than men do...but no one knows WHY that's so. Montel's book makes a powerful connection between severe bodily trauma and MS. Pam's list of impact-driven injuries is legendary.
And I just made a connection: I'm betting roughly nine times more women than men have been physically beaten....
My niece lives just a few miles from you and she has MS.
Knowing others suffer this way makes me grateful for relatively good health.
Informative Hub.
Our empathy to your niece, Will.
And yeah, I, too, appreciate my own health as you do.
MS is definitely no joke. In 1987, I came across a nutritional supplement that impressed me no end. It's not the same product now, and I don't use it today. But for more than a decade I both drank the stuff every day (because it did me some definite good) and distributed it as well.
As a result, my kid sister--who's a Registered Nurse--tried it and also (for a time) let others try it to see if it worked. One of those who sipped a quart or so over a month's time was a lady who was in the latter stages of MS. Bedridden. After a week or two of drinking an ounce a day, she was able to feel her feet when they got cold and ask for a blanket. Additionally, she could at that point ALMOST turn over without assistance.
But her family wouldn't buy a second quart, and my sis couldn't afford to donate endlessly from her own pocket, so that first 32 ounces amounted to all the product she ever got. She rapidly regressed back to the original starting point...and the disease continued to progress from there.
She died at the age of thirty-seven.
I know we're not supposed to reference other hubs in the comments, but this seems to fit what a particular video says in a hub by another hubber, ar.colton, "How to Deal With People Who Don't Believe in Fibromyalgia". It's a YouTube video link at the bottom of that hub, An Update on Fibromyalgia done by a Stanford researcher. He explains the nerve and brain angle you describe. Also, I have Fibromyalgia, myself, and have written a hub on it where I explain something I'm taking that has eased my symptoms quite a bit. I wonder if you and Pam know about it. Sounds like I had as bad as Pam's flares you describe until I got on the supplement I refer to there. Your hub has now gotten me wondering about a cousin of mine who has MS. Thanks for sharing your thoughts! Feeling for you and Pam.
I have fibro and have thought the SAME THING before about it being so much like MS. Thank you for writing this hub.
My sister-in-law has fibromyalgia which took months to diagnose. Interesting hub, Ghost. I am not a keen fan of the medical community when it comes to diagnoses. You just might be on to something.
Back atcha, MsDee.
Actually, the prohibition is against PROMOTING "your Hubs or other sites". I'd say REFERENCING Hubs that are on topic is just fine.
I'll check out the supplement as a possible help for Pam, too. As you doubtless know--having fibro yourself--no stone goes unturned. We've found a few that do make some difference, a lot that don't, and sometimes the mix changes--what worked for a while quits working, etc.
U Neek: Thanks for checking in. Great minds think alike!
Genna: No, we're not exactly fans of the medical community in that regard, either. It probably doesn't help our attitude(s) that so many of 'em (doctors) are happy to pooh-pooh your "story" if you don't look sick, and it doesn't help their attitude(s) that most of them don't have either disease (fibro or MS).
In Colorado, though, we once met a nurse who had fibromyalgia. You can bet that lady understood Pam better than most of her peers did!
Yes, that's been my experience too. Something will work for a while, but then some change in the body's balance then renders what used to work ineffective. It's never a final fix, is it.
Doesn't seem to be, nor is that principle limited to fibromyalgia. In 1987, I began using a nutritional supplement that instantly made a powerful difference in how clear my thinking was toward the end of an office day. It worked for me for nearly ten years...and then quit working.
Great info that is quite educating.
Thanks, Crystolite. It's great to see that much of the educational info is coming from those who are leaving comments. Without those, Pam and I still wouldn't know about Stanford University getting involved and the video wouldn't yet be available on this page.
Both are clinical diagnosis... Before being diagnosed with MS. I was told it was probably Fibro.. I see it as a lose lose... For 3 years I was tested for Lupus. They all suck and there are small steps for improved quality of life, I say this as I am on day 1 of a 3 day steriod IV treatment due to a MS. Flare
Pam was told she had Lupus at least 20 years before the fibromyalgia diagnosis, interestingly enough. Don't envy you on the MS flare treatment--steroids are one thing, but I've never yet met an IV that was any fun at all.
You certainly are a very special man Ghost32 and your wife Pam is one very special lady to have chosen you in the first place.
Heartfelt thanks to you from me for educating others by raising the awareness of Fibromyalgia. :-)
When it came to Pam picking me, I had an edge. Namely, I got to "follow a bad act". She'd been homeless for more than two years, and the male companion she had with her when we first met was...how do I say this...not exactly fierce competition.
You're very welcome on the topic of raising awareness. It looks like the "brand new" MD types ARE finally getting some schoolng in fibro. Pam had to see her primary care physician today (routine checkup). He had a young intern with him who seemed quite aware of fibromyalgia and impresssed that Pam functions as well as she does with it.
God bless you for sticking with your wife and championing this along with her. Enduring such a disease is quite scary and lonely for several reasons. People, even medical professionals believe you are faking the symptoms. if you are believed, symptoms are dismissed because you look healthy. people assume nothing is wrong except crazy and lazy.title of a hub by hubber devin shakur i know we're not supposed to mention other hubs but...
Vie, thanks for your comment. There's nothing wrong with your mentioning Devin's fibromyalgia Hub in this case--the prohibition is against "promoting YOUR Hubs or other sites"; it's not meant to shut you down from simply sharing good information on a third party basis like you've done here.
We've seen a bit of a lessening in the "raving skepticism" out there from medical folks over the past 15 years, but yeah, it definitely still exists.
someone with MS may or may not have pain. they may have poor balance, vision problems, weakness, incontinence or many other symptoms without pain. pain is only one type of nerve dysfunction of the many that someone with MS can have.
fibromyalgia is well-defined these days. every doc should be well-versed and one who isn't wouldn't be my doc for long.
my sister has had fibromyalgia for many years. my sister-in-law was thought to have fibromyalgia, and turned out to have lupus.
there are many diseases which are "cyclical", that is, have remissions and exacerbations. they are all not the same disease.
Cathylynn99, I appreciate your checking in, especially with your background as a former practicing M.D. And I do understand your view that the many "cyclical" diseases are not all the SAME disease. Even further, I'm more than willing to stipulate that you've (undoubtedly!) seen a whole lot more cases of fibromyalgia, lupus, AND fibromyalgia than Pam and I have.
That said, however:
1. Every doc SHOULD be well versed in fibromyalgia these days, but we've yet to find one who was. At least most of them admit it exists now, but during the 15 years my wife and I've been together, she's treated with 21 different physicians residing in 5 different (western) states. Just three of those eventually recorded in their notes that they actually believed her to have fibromyalgia, and none of them would (in our opinions) qualify as "well versed".
Fortunately, her current doctor does believe her and has no problem with a regimen that works as well as any we've experienced so far--which she's been using for more than a decade now--but she had to sell him on going that route in the first place, not the other way around.
2. Pam does have BOTH fibromyalgia and lupus, plus a host of other ailments. Her present physician (as those before him) admits she's the most complicated case on his patient roster. (She was in hardcore denial about the lupus for more than 20 years, having first been diagnosed in the 1980s.)
3. While your opinion that many of these diseases are not the same is certainly "by the book" in present day medical thinking, we reserve the right to respectfully suspect that may be proven otherwise at some time in the future.
4. So far, every MS sufferer we've met (which as I said is undoubtedly a far smaller number than you saw in your practice) HAS had pain along with at least several of the other symptoms to which we refer. I'm actually glad to hear there are some who don't get the pain part--good for them!
5. Pam does have poor balance, vision problems, frequent weakness, and a host of other symptoms.
has pam seen a rheumatologist?
Once, in...let me think...2003 or thereabouts.
As long as we're on the "rheuma" root word, she's long since been diagnosed with (among so many other things) both the rheumatoid and osteo forms of arthritis. Gout. No collagen left, bone on bone head to toe. Many sports injuries (she was a world class athlete). Shrapnel in both feet and ankles, left over from where a guy shot her, TWICE (with a revolver no less), .357 Mag rusty hollowpoint home reloads, and claimed it was an "accident". She was once tested for 300 allergens and tested positive on 273 of them.
The list goes on. :)
COPD....
with fibromyalgia and/or rheumatoid arthritis or lupus, i'm amazed she doesn't see a rheumatologist regularly.
Umm...to what purpose and paid for by whom?
Neither of us has any health insurance (and we're both RABIDLY anti-Obamacre even so, thank you!). She was on SSI and Medicaid when we met, but when we told the feds to take their money and go pee up a rope in 2006, that all went away (which we well understood would happen). She did reapply for ACCHS (Medicaid in Arizona) a couple of months ago; it was denied because my fixed income (which, trust me, is not huge) was (according to the denial letter) THREE TIMES too much to qualify.
In other words, a dead broke illegal immigrant gets government help, Pam does not, and that's the way the flip flops.
Plus, of all the specialists she's seen over the years, one and ONLY one has been helpful in any way. That was a really incredible endocrinologist in Montana, and part of her prescription regimen today incorporates a couple of recommendations he made at the time.
Every OTHER specialist (don't get us started on neurologists!) has been a pain in the butt and, in our very opinionated opinions, has done nothing but harm.
I'm 90% anti-AMA, if you can't guess by this point. The other 10% allows for those few truly exceptional practitioners...one of whom happens to be an RN in Montana and also my kid sister.
Pam deals with doctors as she must, but only as she must. When we first met, she knew nothing about alternative health practices...while I was making my living marketing a nutritional supplement. It took a while for her to accept the possibility that allopathic doctors are just one group of people educated to see the human body from one particular perspective--and that there are many other approaches "out there" which could have value.
Currently, her health regimen involves a "1-2-3" balance: One part AMA-recognized, two parts alternative health supplements and control of her environment,
and three parts use-it-or-lose-it determination and self-healing from inside her own personal Universe. Roughly speaking.
Control of the enviroment includes the choice of homesite, 4 acres off grid near the Mexican border, plenty of illegal immigrants hoofing it northward but still huge doses of peace and quiet and no neighbors except for deeply beloved wildlife.
And it must be working to at least some degree. Since we hooked up, Pam has:
1. Quit alcohol cold turkey in 1998.
2. Threw a number of multiple personalities out of her inner space with absolutely no help from anyone else.
Some of those still try to get back in on occasion, especially times of stress, but they no longer win.
3. Eliminated a lifelong tendency to get thrown off emotional balance at the slightest hint of an insult from others. She's now able, for the most part, to shrug her shoulders, consider the source, and go on.
4. Smoking cessation (currently in progress--her 5th crack at quitting, but making this one actually work).
5. Despite all of her ailments, thoroughly thumping a woman in a hardcore streetfight last November (on my birthday!) after the Nasty One sucker punched Pam's son in front of Pam. Pam always taught her son "never to hit women", and the fight was on. I was present, and I was extremely proud of my lady.
You might way we're "not your normal people".
some foods that may help arthritis:
red grapes, ginger, soy, turmeric, cherries, caffeine, fish (see my omega-3 hub for some low mercury, high omega-3 fish).
sounds like you have been very good for Pam. my mom quit smoking a few yrs ago after umpteen tries. i never call attempts failures. i call them practice for the time that's going to stick.
sounds like Pam had a rough childhood. glad she found you to help her deal with the fallout of that.
Yes, she did have a rough childhood. She also graduated at the head of her high school class, qualified for the Olympics in four gymnastic events her senior year (but didn't have the financial backing to actually go to the Olympics), and had a whole long list of additional impressive accomplishments (including surviving more than 2 years of homelessness).
The arthritis foods you mention: She won't touch anything she dislikes, figures life is way too short--and I understand that. I gobble red grapes like crazy, but she doesn't care for them. Is allergic to ginger, not that fond of soy, allergic to turmeric, cherries yes when we can afford them (yum!), caffeine every day (2 cups of coffee first thing in the a.m., ulcer allowing), loves certain seafood--and does take omega-3 as a supplement.
We agree that attempts are practice, never failure--and my other sister, the middle one, not the R.N., raves that Pam has been good for ME (which she has), so I reckon we both win on that one.
We found each other, both very spiritually and powerfully inner-directed to the laundromat in Tonopah, Nevada, where we met. And she'll be the first to tout the benefits of having "her own psychologist at home". (My college major having been psych.)
13 years ago at the age of 15 I was diagnosed with MS and for the past two years I have been experiencing chronic pain and am on multiple narcotics I had a doctor before realizing I had MS diagnosed me with fibromyalgia and my neurologist says pain is NOT a symptom of MS so what else is it I truly believe either the two diseases go hand in hand or it is all part of MS. Than ghost for posting this.
Our sympathy for your struggle; getting hit that young has got to really bite. Pam thought it was hard enough for her--which it was--and she was in her mid-forties.
As you can tell from my earlier posts on this page, we've yet to meet a neurologist who seems to actually know what he's talking about. There have to be some good ones--the law of averages virtually demands that--but.... Also, both Pam (who was a pharmacist at one time) and my kid sister (who is an RN) have known people with MS who were in EXTREME pain. Let me research this a bit more....
Anyway, you're very welcome, and the best of good fortune to you.
RJVW1983: I don't know where your neurologist went to school, but the MS Association itself lists the following COMMOM symptoms of the disease:
Commonly seen symptoms include:
•fatigue
•visual disorders
•numbness
•dizziness/vertigo
•bladder and bowel dysfunction
•weakness
•tremor
•impaired mobility
•sexual dysfunction
•slurred speech
•spasticity (leg stiffness)
•swallowing disorders
•chronic aching pain
•depression
•mild cognitive and memory difficulties
You'll notice "chronic aching pain" IS very much on the list. Here's the link to that page:
great hub - there is so much we just don't know about the human body and the first thing is that no two bodies are or react the same - the medical profession (of which I was one once) is so busy trying to make sure everyone fits into an identifiable box, they lose sight of the individual.
Oh yeah - I have all of the above but because I also have mild biopolar disorder - it is all in my mind.
wishing Pam good health
Ann: Back atcha on the good-health wishes from Pam. You said it well, the box-stuffing thing.
Pam's current physician(s), the family side (not the shrink, yet) admitted to her during a recent appointment that when she first started treating with them, they didn't believe she could possibly handle the heavy meds regimen she's on, either--which she's been on for nearly 13 years now--but decided to (more or less) give her enough rope to hang herself.
And were startled to realize, over a period of time, that everything she told them was dead-on accurate. They get it now, and we're deeply appreciative of that. Last week, she had to call in to ask for a specific med to treat a problem she gets only intermittently. It's not one they'd ever prescribed before, and most doctors wouldn't have even considered writing the scrip without seeing her first. But the trust level is strong there now, and by golly, they did it!
Yay!
Hi, I am late to reading this, but just wanted you to know how interesting your hub is. I have MS and I have friends who have been diagnosed with Fibro. I am always aware of the pain they are in which is more severe than what I suffer. I don't know if the two conditions are one in the same or not, but I sure wouldn't be surprised if Fibro was included in the MS category. Seems too coincidental that the symptoms are so closely related.
I participate in a MS forum in which some have received double diagnoses of MS and Fibro. I would love to know how they make the distinction, maybe it is the MRI results?
At any rate this is very interesting, thanks for sharing your experience and I hope your wife is doing as well as can be expected.
It does seem too coincidental.
We'd be interested in knowing how they make the distinction, too. It could be the MRI results, since as far as I know, no demyelination needs to show in order to be diagnosed with fibro. If you ever find out, let us know!
Thanks for commenting, and yes, Pam is doing as well as can be expected. Back atcha on that one.
When people ask me to explain FMS many times I tell them its a lot like MS,except for the destruction of muscle that MS does.So this Hub was really awesome to see.For a long time Ive also seen that the two diseases are very similar.Like many with Fibro the dr tested to see if I had MS first.A neurologist told me that I had some Brain demyelination but that it wasnt MS.I have had Fibro since I was around 10.Back in those days tho the drs had NO idea what it was.For the most part I was told I had a rare form of arthritis(and lucky me I also had regular arthritis) or some kind of muscle disease. I actually got a diagnosis from a rheumatologist 16 years ago.Now at 54,I recently had to leave my job because I could no longer do it after stuggling 26 years to make it thru each day at that job.Besides the FMS I need a knee replacement and back surgery.Right now I am in a big time Fibro Flare.Last night I hurt so much I was nauseous and could barely walk up the stairs to bed.I hate these times.
Thank you for this Hub.I am glad Im not the only one seeing the similarities now.My love to Pam.I understand her journey and wish her as many pain free days as possible.
Thanks. Pam has zero pain free days, but she does get some no worse than a 5 on a 10 point scale. Your good wishes are appreciated, and back atcha for sure.
Hi Ghost32,
Your hub was very interesting to me. It seems reasonable that fibromyalgia has its roots in the same demyelination of nerve cells that causes MS. Maybe it is a question of degree. In fibromyalgia,the myelin perhaps degrades in tiny portions over a long period of time whereas in MS the process of demyelination moves more quickly. Maybe that is why demyelination in fibromyalgia patients does not show up very well in an MRI. Anyway, you might be on to something here. Thanks for the hub. Take care and good luck.
It could well be a question of degree. In Pam's initial (and, to date, only) MRI, the scan found 3 lesion areas (patches of white) in the brain. No spine scan was done.
In Montel's case, he had at one point 27 identified patches.
Thanks for reading, and you're definitely welcome "for the Hub". :)
Ghost, I think you and Pam are on the mark that Fibro is "baby MS". As you so eloquently point out, too many symptoms are common to both for them not to be simply different names for the same condition.
I really only became aware of MS about 5 years ago when I and a co-worker who'd suffered from it (at that point) for over a decade became friends. A cousin has fibro, but until I read this hub I'd not connected the two. Now I see the similarities.
Over the years, my friend and I keep running across others also afflicted with varying degrees of MS. So many, in fact - from dissimilar backgrounds and lifestyles - that in my mind MS constitutes an epidemic.
One doesn't have to have an M.D. or a PhD behind their name to know all epidemics have some cause or "trigger" in common. To my knowledge, however, the medical community is only concentrating on drugs/treatments for the symptoms of MS and NOT doing any in-depth studies to isolate the common factor(s) causing a large segment of the population to "catch" this debilitating illness. Same for Fibro.
I suspect this partly due to not wanting the cause to be environmental pollution, thereby exposing BigChem or BigOil to billion-dollar lawsuits, and partly because of the potential hit on BigPharma's profits if the onset of MS and Fibro could be prevented by immunization.
Again, I'm not a scientific researcher, so this is only the opinion of an untrained (but extremely curious) observer.
Voted up, useful AND awesome. ;D
Great post; thanks.
I'm not overly suspicious of environmental pollution (though of course it could well be a hugely contributing factor), but INTERNAL pollution? THAT, I DO suspect.
Pam has plenty of that in her background. Her childhoood near-death bout with rheumatic fever left her with as little immune system as the average HIV positive person. She's had countless sports and, in some cases, abuse injuries: One man (when she was a young adult) used to pick her up by her head and shake her by the neck--cervical spine is "crap" to this day. She still carries rusty shrapnel from home reloaded bullets fired TWICE at her feet and ankles--yep, gunshot aftermath, and she'll be seeing a podiatrist in June to hopefully improve that situation a bit (among other foot-related issues). She's kicked every bad habit but one; does not smoke heavily or inhale deeply, but can't quit smoking no matter how many times and how hard she tries.
Etc., etc., etc.
BigPharma profit hit? ABSOLUTELY, that's a major factor.
Some interesting thoughts there, I never would have linked the two together. I was unaware that demyelination occurs in fibro patients as well - I think it's time to get myself in for an MRI of my head (my Doctors don't yet know if I have fibro). My Grandad had primary progressive M.S until it got the better of him so I know too well what M.S patients go through. All the best to you and Pam.
I'm not sure ANYBODY (aside from my wife & me) has put two and two together regarding the demyelination aspect. Pam's MD at the time was concerned about non-fibro aspects of her many ailments, including balance problems; I DOUBT he was thinking about fibromyalgia at the time. And the techs taking the scan (MRI) were clearly SHOCKED (though they'd likely never admit it) when the white patches started showing up on their monitoring screens.
Good look with your MRI, whenever you decide to have it done, and thanks for the good wishes. :)
Very interesting article about precursor conditions to MS and I think you have the right thoughts about that. If some research could be directed along that route, prevention could be a real option. As it is, research studies can't interact because of regulations; someone has to read it all and come up with another study connecting them, which hits the usual red tape in funding.
Have you asked the MS association to look into your ideas about fibromyalgia?
Back in the 1960s or thereabouts, editor Norman Cousins attributed the same types of symptoms to having inhaled and absorbed jet exhaust from a large plane he debarked and walked past. After hospitalization failed to help him, he came up with a controversial treatment method of his own that worked for a time.
I also remember a documentary that replays on cable TV Stations often, where a wife with MS in a wheelchair began to draw a bath during a lightning storm, a bolt of it hit the faucet as she touched it, it threw her from her chair, and her husband came home to find her up and walking without pain. I don't recommend that treatment for everyone, of course.
The mention of rusty shrapnel and bullets remind me of how Pope John Paul II deteriorated in posture soon after being shot, as if he were melting under arthritis. Adding some of theses metal to the body cannot be good.
Thanks for dropping by, Patty.
The lightning treatment would be interesting--and might even work for Pam, since it's well known to us that the "electrical storms" generated within her (and often enough projecting from her) can be wild indeed. But it's not something I'll mention. She's terrified of just the static electricity from household objects, as is her adult son (who appears to have inherited her ambivalent relationship with electricity).
No, we've not contacted the MS Society at all, having precisely zero faith in any societies of any sort.
The Norman Cousins name rings a bell. Not sure why, though.
Agreed: Adding some of these metals to the body cannot be good. We're adding more, too--next month she gets a full set of dental implants. Titanium screws in the mandibles will hopefully be acceptable to her body.
As for the shrapnel, she'll be seeing a local podiatrist the month following her dental surgery. Several of the shrapnel pieces are staying close to the surface these days, "tenting" the skin as they try to exit the body. The foot doctor should be able to help with that.
Of course, there's also the gouty arthritis in those feet of hers, and plantar fasciitis, and...but who's counting. :)
I have never paid much attention to the Pope, so wasn't aware of the rate of his deterioration following the shooting. It's certainly not surprising, though.
breakfastpop Level 8 Commenter 14 months ago
They have come a long way in diagnosing MS these days. Neurologists now know that migraine sufferers have white patches too. Fibromyalgia is still relatively unknown and sadly there are still doctors around who don't believe it exists. Pam certainly has a lot of hurdles to conquer. I'm glad she has you.