TEVA

Teva CEO

I hate having to take Copaxone. It's not so much the shots that get to me, or the fact that it doesn't seem to be doing anything to slow this disease - it's because TEVA pharmaceuticals is one of those bad bad drug companies who overcharge for their meds and do so obscenely and even after being reprimanded and charged a fine - and now they are dancing in the streets because a rival company is raising the price on another MS drug and so they can probably increase their charge for Copaxone.
It's this sort of practice that makes me see red. Why do companies have to become obscenely rich on the illness of others?
Of course, I should check my mutual fund portfolio. Perhaps I have some stock in Teva. In which case, I've been supporting their greed and gluttony.
"Curses," as Snidely Whiplash would say, "Foiled again!"

Word Salad, Or gazing through a diver's mask...

The other night I headed out for dinner with some friends despite my feeling of overwhelming fatigue after the holiday. I was glad I had a sweetie to drive me because for most of the evening I felt as if I was wearing a diver's mask - one of those ones where you can just see out a tiny glass screen, while the rest of your head is surrounded with copper. I couldn't understand my voice level - I was sure I was shouting and kept trying to bring my voice down. I have no memory about our conversation; I barely remember what we ate except that it was delicious and so is stuck in my sensory memory. All the time I spoke I felt like I'd been heavily into the wine - my mouth needed thought to form words and they seemed to come out mushy and drunken.  Muscles for speech were sluggish and sullen.
We staggered home - me tacking heavily to the right and left (again, thank heavens I wasn't driving) and I fell into bed to sleep for 12 hours straight.
It's probably the worst I've been cognitively for some time, and reminded me of how I felt after a couple of days at work. It amazes me I was even able to show up. Small wonder I seemed like an idiot to others, or a grump, or a bitch. Who knew what my voice was doing? Or my mouth? I certainly didn't. I feel like I should apologize to everyone.

Multiple sclerosis linked to different area of brain

Multiple sclerosis linked to different area of brain

Oh goodie, goodie. Apparently my thalamus is shrinking. Like a 70 year old's. I am upset. I've always liked my thalamus, rounded and plump as it oughta be. Now I am envisioning it on a Lindsey Lohan reducing diet, complete with drug enhancements and untold and weird cellular attacks.

While I am enchanted by the thought that people are still interested enough in MS to research it using very expensive equipment, none of the research seems to be leading to effective treatments. Just more bad news.

Well, I'm lying. There are some exciting new developments hovering on the horizon. Things like remyelinating drugs, treatments that slow the disease and don't merely mask its effects, good stuff like that.

But they are slow in developing, and meanwhile, my thalamus is shrinking...

On the other hand, I now have a perfect medical explanation for why I am going crazy!

Research Roundup: CCSVI, New Drugs, and Other Items of MS Interest | Wheelchair Kamikaze

Research Roundup: CCSVI, New Drugs, and Other Items of MS Interest | Wheelchair Kamikaze

medication tango

Being a "patient with MS" means being a patient on a cocktail of drugs, most of the time. They pitch and yaw you, spinning you between spasm and lethargy, dizziness and balance, drowsiness and energy. It's like walking a balance board with wobbly bits. There's temptation on that balance board, too. But you always pay.
Today, for example, I am totally stoned. Last night I took my usual medication to stop my legs kicking violently - it's a benzodiazapine and I've stayed on the same dose for a long time, for which I am proud, as these drugs are addictive, habit-forming, and require, usually, a regular upping for effect. I might, in fact, need to up mine as I wake so often at night, but I'm fighting that fiercely.
And last night I took a full pill for my leg spasms - baclofen - the mystical drug that has put so many people into wheelchairs. See, the same controls that make your legs spasm painfully are also the ones that make them able to hold you up. Usually I take a half pill. I didn't last night, wanting to try to sleep an entire night for a change.
So today I can barely see outta my eyeballs. I am too tired to drink my coffee. Taking the dog for his morning walk was like a trip in my head - I have little remembrance of the event, not of the temperature of the day or the smells of the air or anything. I finished my shower without noticing the plug was in the tub so the water was up over my ankles. Fair enough, I can't feel my feet anyway, but I should have noticed the sloshing...
So, I'll have to adjust down again and deal with the hours of nightmares I have every night, probably caused by my waking in the midst of them. And be tired because of that. And have painful bum spasms when I walk. Tra la tra la!
Added to that, I've been taking big doses of Vitamin D, 4000 iu a day, and now I find out it seems to be tied to heart disease. So will have to adjust that as well.
Of course, my copaxone dose remains the same. Always. No matter what I weigh or how ill I am. This baffles me, and makes me doubt it's efficacy, especially since I don't seem to be holding steady in my disease.
But maybe it's all just drug reactions? Or interactions? Or something?
I hate having to learn new dance steps all the time.

does being numb make my soul numb?

Being numb now for over a year, I often wonder what other effects it has on me. I'm not totally numb - as I've noted, sometimes I have pieces of sensation. The numbness is becoming more profound, though - affecting my balance, my ability to write and type and chop bagels without injury, blocking inner sensations from bladder and bowel and other more interesting places. (Dang it!)
Neurologists invariably say they are less concerned with numbness as a symptom than the other things like muscle weakness and such. It's not supposed to be so serious. And yet, it changes our lives.
 For those of us so enclosed, it's pretty disabling. It disconnects me from the world, makes it seem like I'm watching outside me through a pane of glass - and with my blurring vision, that isn't so great. And it has this other effect, too, of making me feel distant from people, from the world, like I'm shut in a padded room where even the room temperature doesn't make me feel.
Philosophically, it makes it difficult to care. Because I feel distant, I have to constantly make an effort to reach out through the fluff to touch others. It's easier to remain inside, where I don't have to make the effort.
  Maybe the exterior numbness is contributing to depression. I know I've battled depression for years now, and wading around there in the darkness does make things seem muted, edges less sharp, needs less urgent. I find as I get more depressed or more numb, I go for exotic tastes, different experiences, more carbs.
I probably just need to exercise more, to thrash my wooly body through space so that I can get a feeling for where my limbs are. Usually that helps The deep breathing helps, too. The exercise makes me more numb, but somehow makes that all right after all.
But oh, it would be nice to feel certain things again: the fur of my puppy, the touch of my friend's hand, the roughness of sand, the smoothness of rocks, the barrel of a pen when I pick it up to write.
And let's not spend too much time on this, but it would be smashingly lovely to feel making love again. Or a bit more, anyway. 
Maybe I need those steroids. Might help my sex drive, too. Of course, would grow more hair to be fried off by my friendly local electrologist, but it could be worth it...I hear ZZTop are still doing pretty well at their advanced ages...


Here are a couple of things from the National MS Society (which as usual, is the name of the US branch - why they think the rest of the world isn't a nation, I dunno) on numbness. Reality is, if you've got it, you're screwed. Not that you'll notice...


There are no medications to relieve numbness. Fortunately, however, most instances of numbness are not disabling, and tend to remit on their own. In very severe cases, a neurologist may prescribe a brief course of corticosteroids, which often can temporarily restore sensation. National MS Society


http://youtu.be/jjcD7a3SB9o

No wonder I feel dizzy

It makes sense that MS would affect the autonomic nervous system, something we don't talk much about since we usually deal with the muscle problems and cognitive problems and all that other messy stuff. But apparently, according to this study, we may be losing venous pressure while sitting.
Which a lot of us do a lot of.
PS: I think it's hilarious one of the researchers is named Venturi.
I still remember reading the deadly serious warnings on our BBQ about SPIDERS IN THE VENTURI TUBES. Of course when we looked at our BBQ after the long winter, mice had nested in it, and their woven bed made out of our lawn chairs had indeed prevented any spiders from seeking a home. But that's another topic.
Note, CCSVIers, this has nothing to do with blockages, so please don't fill my blog with "Aha! Proof!" rants. It's tiresome. And this is a preliminary study...needs repetition. Still, very interesting. I think we should be aware of the autonomic effects of MS as it may help explain the weakness that we feel and perhaps some of the vertigo.

http://www.msif.org/en/research/ms_research_news/quantitative_col.html

Quantitative Colour Doppler Sonography Evaluation of Cerebral Venous Outflow: A Comparative Study between Patients with Multiple Sclerosis and Controls
		summary: This interesting paper published by a group from Italy reports data from 27 healthy adults and 52 patients with MS. The difference between cerebral venous outflow (CVF) when lying down and CVF in the seated position which they refer to as ΔCVF was found to be negative in 59.6% of patients with MS and positive in 96.3% of healthy subjects. Statistical analysis showed that negative ΔCVF values were significantly associated with MS (p<0.0001). However there was no significant correlation with clinical variables. The authors comment that negative ΔCVF has a hemodynamic significance, since it reflects an increased venous return in the seated position, and suggest that in MS it may be a result of vascular dysregulation from involvement of the autonomous nervous system. authors: Monti L, Menci E, Ulivelli M, Cerase A, Bartalini S, Piu P, Marotti N, Leonini S, Galluzzi P, Romano DG, Casasco AE, Venturi C. source: PLoS One. 2011;6(9):e25012. Epub 2011 Sep 22. weblink: click here category: Imaging related research news: click here glossary:     Cerebral     Multiple sclerosis     Nervous system     Sclerosis     Sign