New research shows that people with MS are more likely to suffer new lesions in the Spring and the Summer (April and August specifically). This is due to a combination of heat and radiation from the sun.
So lemme see . . . we are supposed to get a lot of sunlight for the beneficial vitamin D effects, but also stay out of the sun because of the heat and radiation.
Damned if you do, damned if you don't. It's one of the most common symptoms of multiple sclerosis.
Having gone three years, to the month, without an MS relapse, I am now finally suffering one. This has come in much the same way as my first really noticeable attack in the Spring of 2005. At that time (and now this) the symptoms occurred mostly in my brain and manifested themselves in the form of confusion, inability to concentrate, forgetfulness, and a general sort of spaced out feeling. Along with those symptoms there is another which doctors say they have never heard of--but I sure have, and I know other MS sufferers who have as well. This is a sort of sound/sensation inside the head. It's like you can hear it, but of course you're not hearing it with your ears, and you can feel it as a sort of random pulsation, dashing from this point to that, like a electrical storm within the brain. It tends to cause a headache, and it makes me feel lightheaded and faintly nauseous. There is also the occasional feeling that I am about to faint.
In 2005 this was diagnosed as ... well, as 'We don't know what this is ... and then later, in 2007 when I had my second attack, the first was rediagnosed by another neurologist and another radiologist as 'classic MS.'
So that's where I stand--hoping the old CNS will repair itself quickly and restore my brain at least to its already (post 2005) level of functioning.
Funny how much you can forget about these things when you're not having to suffer them. I had just almost turned into a normal person, but now here we go again.
I am on Copaxone for my MS. It is a daily subcutaneous injection of glatiramer acetate and is one of the (when I went on it in 2003) four Disease Modifying Drugs (DMDs) prescribed to people with multiple sclerosis (MS) in the UK (and elsewhere). Back in 2002 there was a huge furore when N.I.C.E. decided that us having drugs that could slow or stop the progression of MS was not cost effective and so the NHS would not be able to prescribe them to us. Then the NHS and the pharmaceutical companies producing the medications came to an agreement which became called the risk sharing deal. Long story short we were able to get Copaxone and the other DMDs on the NHS.
Leap forwards to today when my mother in law sent us an email asking if we had seen the bit in the Telegraph about the MS Society and the DMD risk sharing agreement. I was watching TV but hubby passed his iPad over to me saying, "I think you had better read this."
Hubby then found the statement on the MS Society website that explains it in much better terms than the Telegraph article had. In my opinion the latter came over as sensationalist and reactionary. I am writing this blog post to hopefully help those of you that have not read the MS Society postings but may have heard about the newspaper article(s) from relatives.
The DMDs work; they reduce relapse rates and have improved quality of life for many people with MS. But the scheme has been poorly managed and its is wasting valuable time and money.
In December 2009 the MS Society withdrew its support for the scheme (read more) . We took this decision after repeatedly raising concerns with the Department of Health over a four year period to no avail.
Despite withdrawing our support from the scheme, we want to make sure that people with MS will not face issues accessing DMDs on the NHS. We’ve raised this with the Department of Health and have written assurances from them that DMDs will still be available even if the scheme is stopped.
Having been practically without MS symptoms since March, the disease now returns in good form-having rested up, I suppose, to where it can attack with new vigor. The familiar morning body stiffness and aching is back, and my personal favorite, the Frankenstein gait, returns.
"You're limping," my wife says. "Why are you limping?"
It sounds like an accusation--the same as when one might say "I smell alcohol on your breath," or "Have you been smoking again? You smell like an ashtray."
So here I go again with MS, right? How thoughtless of me.
So I say "No I'm not limping, my toe just hurts." So I say "I wasn't groaning, I was choking on a bit of calimari."
What was I thinking--that the disease had just awakened one morning and forgot it was there? Well sure. It seemed convenient, a bit of good luck to say the least.
But I guess a disease, like an elephant,never forgets.
"Just like starting over," as the John Lennon song goes. Only it's not like starting over. It's simply like going back--like one does when his week of vacation has ended and he must return to real life, his job, his cares, his concerns. We need to catch up, get back in the groove. Paradise was nice for sure, but this multiple sclerosis has a life to live--Mine.
Gosh, so long since I've had anything to say about MS. Maybe because it's been so long since MS had much to do with me. I guess I've finally found the cure, folks. Retire, move to Bali, get mega doses of natural vitamin D from the ever present sunshine. Just say I quit. Just say No. Tune in, turn on, drop out. It's all in yer head anyway, right?
Seriously though, I have walked every day, swam every day, arisen early every morning and gone to bed late every night without undue fatigue or spasticity or tingling or numbness or aches or pains. Even the cobwebs in my head have cleared at least to some extent. I used to get lost in the same city I had lived in for 56 years, in fact in my own neighborhood--now I find my way though the surroundings are completely foreign.
Vitamin D, my friends. If you can't get the natural stuff from the Bali sun, buy a sunlamp and turn it on HIGH.
Maybe diet helps too. Rice, chicken, sambil, mango, guava, etc., etc. And milk from a box, which does not need to be refrigerated. (I don't know what it really is). Lots of menthol, sucked most often through cigarettes. Lots of Bintang (the local beer).
So forget the Avonex, forget the Copaxone. Do not inject other than to inject yourself into the Indian Ocean. At least once a day. Understand that time is short. Always has been, always will be, and is now more so than ever.
Don't worry, be happy.
No baclofen for the last month, no Provigil, no NuVigil, no vicodin, no gabapentin, no Paxil, not even a freaking Tylenol.
Sweat it out, literally. Drink lots of water (though bottled only--you don't wanna drink the stuff they call water here).
Who by worry has ever added a single minute to his life?
Make yourself as busy as possible at doing nothing. Soon you will have no time whatsoever to spare.
My hidden MS has forced me to get a GPS so I can avoid getting lost here in Portland. I mean I have lived here for almost all of my life and now experience that zone of saying "Where am I and will I ever find a road I recognize. So we got a GPS and named her Zin as in the wine. Zins are one of my Faves and she even will talk to me as in telling me where to turn and when.
I sa Zin talks to me, however doesn't seem to want to respond to my questions. Oh such is the world of technology. I am sure people that see me talking to my GPS wonder about my sanity, but they just don't know how I love her. I mean she can keep me from driving down a road of doom. She can remind me that I am on a certain street and even recalculate a good path if I don't go the way she recommended.
Such is life in that I need better and better technology to cope with MS. I have an iPod where I can write grocery lists and can even program a reminder alarm so I can look at the list and know that I need to go to the grocery store.
I have yet to figure out the recording of my notes so I can hear what I need to do. I think this is kind of wierd because I really hate it when I have to send an email to my office to remind me to do something. I have even done the email and also left a message on my phone. I frist thought this was a bit OCD, but then I remembered I have MS.
Now all of this has bugged me, but I can still do the econometric model work with ease.
I was sitting next to a co-worker at a group pot luck in my office and he has Parkinsons. Both of us had the shaking hands and we just said it sucks and then tried to eat some of the food.
Strange experience of late with Ambien. See, I have this deal going on where my body wants to twitch and jump around in bed all night. No partner, mind you--just me and my body. It is rather like restless leg syndrome, but of course it's not, it's multiple sclerosis, and therefore the drug commonly prescribed for RLS, Requip, does not work. For this reason my PCP prescribed Ambien.
Now here's the weird part: One or two Ambien tablets will knock me out within perhaps ten minutes; however it proves to be a sure thing that I will then wake up at about 3 o'clock in the morning and find myself completely unable to go back to sleep. Absolutely wide awake, only tired and exhausted. Can you imagine it?
So it is that I've been knocking about since 3 a.m. I find that there is not a whole lot to do at 3 a.m. Ones friend are of course asleep, as is ones wife, even ones dogs--although I will give credit to Smokey for staggering out to the dining room briefly just to see what the hell was going on.
No one I know is online at 3 a.m. (although someone named Sexy Mandy wants to chat on Yahoo).
Finally 6 o'clock rolls around and I head for Starbucks to have the first of what will likely be two dozen cappuccinos. Now everything about Starbucks is wonderful as far as I'm concerned, except for the music. Why must they have loud music playing, generally music with a jittery, Latino sort of beat. Do I need this? What is the purpose? Am I to be happy because of this upbeat music? Is this any way to wake up? For God's sake, I'm already on edge here folks!
Sooo . . . I think a doughnut would do nicely just now. Along with another coffee.
Life is a funny sort of business. It's also the only business out there. Every cloud has a silver lining. And every silver lining has a cloud.
Scientific research done with the use of a brain already detrimentally affected by what one is trying to research proves to be a method less than ideal.
Hours, or at least minutes of exhaustive research have I devoted (since yesterday--see previous entry) to the question of how the insides of sluggish arteries might be scraped or otherwise scoured clean, thus (theoretically) eradicating MS--beating my head against the proverbial wall, putting the horse before the carriage, picking at bits of invisible matter in the air--how to get at the damn things (the arteries, I mean)?
But I had a dream, a vision in the night, of angels descending and ascending on a ladder, and upon waking I suddenly knew that I had been completely obtuse--for I suddenly realized that what is on the outside is best approached from the outside, and what is on the inside, from the inside.
You see? To work from within we must start from within.
What, I asked myself, works within the blood, within the vein, within the artery--from within the system?
Viagra! What else? Suddenly the answer seems just as simple as can be.
Now, of course I have no Viagra on hand (what kind of man do you think I am?), but I figure that procuring the same cannot be too difficult. I could, for instance, ask around at retirement homes, or check the black market, or, if worse comes to worse, tell my doctor that I need it for a friend.
That's the easy part. The next thing will be to determine how much, and how often. What is the optimum dose for artery scouring, and what risk, at the same time, would I run of exploding elsewhere? Would I need volunteers to lend a hand or something, or am I up to conducting this experiment single-handedly?
More questions, to be sure--but in hard research such as this, there are always questions to be satisfied.
As most of us are now aware, the new idea vis-a-vis MS is that it may actually be a vascular malfunction rather than an autoimmune disease, and that cleaning out blocked arteries may be curative.
That's all well and good--but what I'm wondering, along purely practical lines, is how one might do this at home, rather than face the prohibitive expense of hospitalization and surgery.
I'm wondering if a toothbrush will work, and whether one should apply just the bare bristles, or maybe add a mild soap, such as Dove or Ivory. The fact that Ivory soap floats may also be pertinent (although I don't know how).
Would this be a cleaning or a scouring. Another question without an answer thus far. If the the preferred method is the latter, would this call for a pressure washer, or something less intense, like a water pick?
How to get at the arteries in the first place? This is a major difficulty, and could quite possibly be a deadly one.
One thing I know, however, is that anything that can be done in a hospital or in an auto repair shop--at Les Schwab or at Computer Geeks--can be done in one's own garage or den. My father taught me that. It may take more time, it may be messy, it may cause more problems along the way than you began with--but in the end you've accomplished the thing without the help of the so-called experts, you've done it at a fraction of the cost, and you can walk away with the sense of personal self-sufficiency that you can't get anywhere else.
After all, a handful or arteries can't be any more complex than a carburetor, now can it?