Since I suffer from Multiple Sclerosis, I figure I should provide a brief primer on the disease.
I'd like this blog be more about my experiences with the disease, and the way it's changed my life and colored my perceptions and ideas, than about Multiple Sclerosis itself. And, of course, this will be THE place to find Wheelchair Kamikaze videos. I'll post information about significant developments in MS research, and also fill everybody in on my own history with the disease, but this won't be a repository of clinical information about all things MS.
Anyway, here's a brief rundown on the earthly paradise known as Multiple Sclerosis:
The first thing that you should know about MS is that having it sucks big fat hairy monkey balls. The biggest and hairiest you can imagine. Really, it does. Surprisingly, though, once the shock of learning you have it wears off, life goes on, albeit in a form that you never wanted or expected...
Multiple Sclerosis literally means "many scars", because the primary diagnostic manifestation of the disease is areas of scarring appearing in a patient's central nervous system (the brain and spine), which can be seen on MRI images.
The symptoms of MS include muscle weakness, numbness and tingling, visual problems, and cognitive deficits (such as memory loss, difficulty finding words, and problems with comprehension). MS comes in four basic flavors: relapsing remitting multiple sclerosis (RRMS), secondary progressive multiple sclerosis (SPMS), primary progressive multiple sclerosis (PPMS), and progressive relapsing multiple sclerosis (PRLS).
The vast majority of MS patients (about 85%) suffer from RRMS, which means their disease is marked by distinct relapses and remissions. During the relapsing phase, their symptoms flare up, and they can become quite disabled. After a period of days or weeks or months, these relapses subside, and are followed by periods of remission, during which their symptoms subside significantly, and their level of disability can be dramatically reduced. Each relapse can leave behind residual problems, which accumulate during the course of their disease. This accumulated disability can leave many long-term RRMS patients significantly impacted by their MS.
After a duration of years (typically 10 to 15) a high percentage of RRMS patients progress to the SPMS stage of the disease, in which they no longer suffer relapses and remissions, but their symptoms instead progress steadily over time. Instead of hills and valleys, think a gradual slope downwards.
About 10% of MS patients, myself included, are classified as PPMS. These patients never go through the RRMS stage of the disease, and therefore never experience relapses and remissions. Instead, their disease is progressive from the outset, and they ride the downward slope of disability progression for the duration. In general, PPMS is considered a more severe form of the disease, as patients accumulate disability much faster then RRMS patients.
PPMS differs significantly from RRMS/SPMS, so much so that many researchers think it may be an entirely different disease. While RRMS strikes women in much higher numbers than men, PPMS strikes men and women in equal numbers. Without getting too technical, the test results exhibited by PPMS and RRMS patients are often starkly different. Additionally, none of the treatments available for RRMS have any effect on PPMS. It is currently considered untreatable by mainstream MS physicians.
PRMS is the rarest form of the disease, and strikes about 5% of the MS population. It is marked by the steady progression of disability along with periods of relapse, when symptoms temporarily grow more severe. Like PPMS, PRMS is often more aggressive than RRMS.
Current treatments for MS (almost all directed at RRMS) all seek to either modulate or suppress the immune system, because it is thought that MS is an autoimmune disease, meaning that a patient's own immune system has gone awry and is attacking their own cells. While this hypothesis is widely accepted, it has never been proven, and the cause of MS is still a great mystery.
Being a hyper opinionated New Yorker, I have lots of takes on all of this, which I'll expound upon in future posts.
Did I mention that having MS sucks big fat hairy monkey balls?
I wish u all the best. This is a great site and will continue to follow. My husband was just diagnosed feb. 9th and is taking the copaxone inj. and baclofen. I do not know what to expect and just keep looking for sites like this. THANK YOU and take care..
ReplyDeleteHuge hairy monkey balls ...LOL try huge hairy sweaty monkey balls after the monkey has been playing body paint with his own poop! Yeah, it's kinda like that!
ReplyDeleteThanks for this!
God, I so much agree with the monkey balls.
ReplyDeleteYour explanations are great especially the hairy monkey balls,youy're video with commentary is great.I have found that keeping my sense of humor is what helps me get through.
ReplyDeleteakidna: thanks for the kind words. My best wishes go out to you and your husband. The pace of MS research is getting faster all the time, so hopefully her husband will benefit from all the hard work being done.
ReplyDeleteAlong Time Pleasures: well, you've certainly upped the monkey balls ante. I like it...
Anonymous: a sense of humor is one thing that MS can never steal...
Since August of 2015, I have had symptoms very similar to yours. The tingling and numbness only affect my right side. It subsided in my feet after a couple chiropractic visits but still sits in my right hand and arm, The neurologist is saying MS. I have only 1 lesion on my spine, on my neck. No other symptoms. I am 40 yrs old and a mother of 9. Do you have a list of questions that a "newbie" should ask the neurologist? I'm still refusing to believe that ms is my future.
ReplyDeleteSo sorry to hear about your onset of symptoms. I don't have a handy set of questions for you to ask your neurologist, but certainly you should ask him about other possible causes of your symptoms. There is no "test" for MS, so it's a diagnosis by exclusion. In other words, the doctors exclude other possible causes until MS is the most likely solution. Have they done a lumbar puncture on you? If not, the results can be revealing. Is your neurologist an MS specialist? If not, I highly, highly recommend that you go see a physician who specializes in treating MS, even if it means having to travel a distance. Multiple Sclerosis is a complicated disease, and most general neurologists simply don't deal with it enough to make a definitive diagnosis.
DeleteIn any event, you should definitely get a second opinion. Although having only one lesion is unusual, it's not unheard of, as my case illustrates. Of course, I still don't have an absolutely definitive diagnosis of MS, and probably never will.
Try not to hide behind a veil of denial. Yes, the prospect of having MS is immensely frightening, but the consequences are too serious for you to deny the possibility. If you do have MS, it's very important that you find out whether or not you are experiencing active inflammation within you nervous system, because if you are there are medications that might help the situation.
Be aggressive in your questioning, and gather as much information as you possibly can. You need to be your own best advocate, and, armed with cold, hard facts you'll be best prepared to handle whatever the ultimate outcome may be. Wishing you only the best…
For more information on other possible causes of your symptoms, you might want to check out my post "the misdiagnosis of MS", which you can find using the search box on the upper left-hand corner of this page.
Thank you so much for taking the time to respond! I have not yet done a lumbar puncture since I am still pretty new to all of this. The numbness started in August right after a surgery in July. The drs immediately said MS and have not ran any other testing except for the MRI which revealed the spot on my neck. I have mostly researched myself and the drs I have sen are not particularly interested in what I have to say which is pretty frustrating. I will be contacting a specialist to make an appt, Thank you for suggesting that because honestly I just assumed a neurologist was the specialist. Your blog has been the most helpful and calming and I am grateful for people like you that put the info out there in a very honest way!
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