Chronicles of Life with Multiple Sclerosis
While I haven’t been blogging here to avoid falling into an illness absorbed spiral (and focusing instead on baseball…Go Red Sox!). The vaccine I was required to get before starting Gilenya made it possible for this post. Yes. this post in which I share that I have the freakin’ chicken pox. 34 years old and I have the chicken pox for the first time. To be fair thanks to the vaccine its a mild case… but it sucks and I’m sure I’ll end up getting the shingles in a few years anyway.
Thanks MS! you are forever making my future New York Times Bestselling memoirs more interesting. heh.
You know what really sucks?
You can be perfectly fine - almost feeling normal, even. And then It comes. It comes and whispers:
You’re sick. You’re never going to be normal. Who are you trying to fool?
It makes you miserable, on top of whatever your body’s latest rebellion is, and drags you down so far that all you can do is lie there and stare into space. You’re not crying, you’re not even sad…just dealing with reality:
Look at yourself! Everyone sees how you really are. Your scars, your dark circles, your weakness…you can’t hide it.
It isn’t going to go away.
Everyone tells you “Get better soon,” but we both know how likely that is…
It is a permanent state.
You’ll never be better…
It pulls at your deepest fear:
You’ll only get worse.
And all the positive talk in the world can’t make It go away…not easily, and never permanently.
This week we will be check on how our “stress awareness” is going and look at some forms of self care that can help make this Spoonie life better.
If you get a chance, read A Not-To-Do List for the Chronically Ill. This article does a great job exploring the social and emotional pitfalls many of us might fall into.
I’ll see you Wednesday night from 9-11PM EST for #SpoonieChat.
Starting a new drug is always an adventure. The list of side effects are often repetitive and sometimes the SNARK just has to be released.
What is Baclofen?
A muscle relaxer and an anti-spastic agent used to treat muscle symptoms caused by multiple sclerosis, including spasm, pain, and stiffness.
Important information about Baclofen
- Baclofen may impair your thinking or reactions.
- Be careful if you drive or do anything that requires you to be alert.
Pass me the remote.
- Drinking alcohol can increase certain side effects.
Let me guess, being alert and having balance?
- Do not use Baclofen at a time when muscle tone is needed to assure safe balance and movement, it may endanger your physical safety to be in a state of reduced muscle tone.
When exactly would someone “choose” falling down?
Stunt double is not on my resume.
- Using Baclofen may increase your risk of developing an ovarian cyst.
I’m good here. Fresh outta ovaries.
- You should not use Baclofen if you are allergic to it.
Ummm. Is there a way to know this before I take it?
bwahaha you are made of win.
Other side effects include:
its recommended that you remain prostrate, in a pile of kittens, within view of a tv, in a location with quality internet access. Failure to do so can cause the drug to seem ineffective.
consult your doctor when they aren’t in a bad mood and think you’re imagining your symptoms.
A diagnosis of multiple sclerosis (MS) is a hard lot. Patients typically get the diagnosis around age 30 after experiencing a series of neurological problems such as blurry vision, wobbly gait or a numb foot. From there, this neurodegenerative disease follows an unforgiving course.
Many people with MS start using some kind of mobility aid — cane, walker, scooter or wheelchair — by 45 or 50, and those with the most severe cases are typically bed-bound by 60. The medications that are currently available don’t do much to slow the relentless march of the disease.
In search of a better option for MS patients, a team of UW-Madison biochemists has discovered a promising vitamin D-based treatment that can halt — and even reverse — the course of the disease in a mouse model of MS. The treatment involves giving mice that exhibit MS symptoms a single dose of calcitriol, the active hormone form of vitamin D, followed by ongoing vitamin D supplements through the diet. The protocol is described in a scientific article that was published online in August in the Journal of Neuroimmunology.
"All of the animals just got better and better, and the longer we watched them, the more neurological function they regained," says biochemistry professor Colleen Hayes, who led the study.
MS afflicts around 400,000 people nationwide, with 200 new cases diagnosed each week. Early on, this debilitating autoimmune disease, in which the immune system attacks the myelin coating that protects the brain’s nerve cells, causes symptoms including weakness, loss of dexterity and balance, disturbances to vision, and difficulty thinking and remembering. As it progresses, people can lose the ability to walk, sit, see, eat, speak and think clearly.
Current FDA-approved treatments only work for some MS patients and, even among them, the benefits are modest. “And in the long term they don’t halt the disease process that relentlessly eats away at the neurons,” Hayes adds. “So there’s an unmet need for better treatments.”
While scientists don’t fully understand what triggers MS, some studies have linked low levels of vitamin D with a higher risk of developing the disease. Hayes has been studying this “vitamin D hypothesis” for the past 25 years with the long-term goal of uncovering novel preventive measures and treatments. Over the years, she and her researchers have revealed some of the molecular mechanisms involved in vitamin D’s protective actions, and also explained how vitamin D interactions with estrogen may influence MS disease risk and progression in women.
In the current study, which was funded by the National Multiple Sclerosis Society, Hayes’ team compared various vitamin D-based treatments to standard MS drugs. In each case, vitamin D-based treatments won out. Mice that received them showed fewer physical symptoms and cellular signs of disease.
First, Hayes’ team compared the effectiveness of a single dose of calcitriol to that of a comparable dose of a glucocorticoid, a drug now administered to MS patients who experience a bad neurological episode. Calcitriol came out ahead, inducing a nine-day remission in 92 percent of mice on average, versus a six-day remission in 58 percent for mice that received glucocorticoid.
"So, at least in the animal model, calcitriol is more effective than what’s being used in the clinic right now," says Hayes.
Next, Hayes’ team tried a weekly dose of calcitriol. They found that a weekly dose reversed the disease and sustained remission indefinitely.
But calcitriol can carry some strong side effects — it’s a “biological sledgehammer” that can raise blood calcium levels in people, Hayes says — so she tried a third regimen: a single dose of calcitriol, followed by ongoing vitamin D supplements in the diet. This one-two punch “was a runaway success,” she says. “One hundred percent of mice responded.”
Hayes believes that the calcitriol may cause the autoimmune cells attacking the nerve cells’ myelin coating to die, while the vitamin D prevents new autoimmune cells from taking their place.
While she is excited about the prospect of her research helping MS patients someday, Hayes is quick to point out that it’s based on a mouse model of disease, not the real thing. Also, while rodents are genetically homogeneous, people are genetically diverse.
"So it’s not certain we’ll be able to translate (this discovery to humans)," says Hayes. "But I think the chances are good because we have such a broad foundation of data showing protective effects of vitamin D in humans."
The next step is human clinical trials, a step that must be taken by a medical doctor, a neurologist. If the treatment works in people, patients with early symptoms of MS may never need to receive an official diagnosis.
"It’s my hope that one day doctors will be able to say, ‘We’re going to give you an oral calcitriol dose and ramp up the vitamin D in your diet, and then we’re going to follow you closely over the next few months. You’re just going to have this one neurological episode and that will be the end of it,’" says Hayes. "That’s my dream."