Multiple Sclerosis

Posts about MS

A Bitter Pill To Swallow: Gilenya (Fingolimod) death toll up to 11, FDA reviews drug.

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For those of us with Multiple Sclerosis, Novartis’s fingolimod has been the first real pharmacologically approved option for a disease modifying drug that would allow us to stop either taking injections (with Copaxone, Rebif, Betaseron, or Avonex) or having a monthly infusion with Tysabri.

Now, I don’t know about you, but most folks don’t love needles. Gilenya was the hope of generations of MS patients to be able to simply take a pill for our condition. That’s why, when a patient died within the first 24 hours of their first dose of Gileyna, Novartis was reasonably concerned.

Both the European Union and the FDA are reviewing Gileyna (also known as Fingolimod). This doesn’t mean that it is going to be pulled from the market, or that the drug itself is bad! It just means they want to review it to ensure the safety of Europeans and Americans who have multiple sclerosis and who choose to take that medication.

This doesn’t mean the end for Gileyna. There were a number of deaths from PML that occurred before Tysabri was pulled from the market in 2005 and then reintroduced in 2006 with new safety precautions and a “risk-benefit” analysis.

Now, I don’t know about the “risk-benefit” analysis for any of my fellow MS sufferers. I can only speak for myself… but when death is on the line with your disease modifying drug, I personally believe that you’re messing with something far worse than your incredibly annoying and often painful disease.

To put it frankly: Multiple sclerosis itself is not fatal, so why would you take a drug that has proven itself fatal to others and very well might cause fatality in you?

I may not love giving myself a shot every night, but I can guarantee you that I will continue doing it until they create a pill or liquid that doesn’t kill folks — or until my symptoms disappear (and stay gone) thanks to the Paleo Diet.

That being said, I have plenty of friends online who would swear by their wonder-drug, and who are doing very well on Gileyna and are hopeful that the FDA simply says, “keep in good contact with your doctor.”

Whatever the outcome, my heart goes out to the families who have lost loved ones, and my hope is that the safety and care of those patients still living and on the drug are put ahead of Novartis’s profits, while real research is done.

Good health, everybody!

Scientists have found a way to repair severed nerves!

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Well butter my biscuits, and serve me grits! (SO NOT PALEO! *gasp*)

It looks like, according to the Journal of Neuroscience Research, there is a new procedure that has been developed that can repair severed nerves!

“We have developed a procedure which can repair severed nerves within minutes so that the behavior they control can be partially restored within days and often largely restored within two to four weeks,” said Professor George Bittner from the University of Texas. “If further developed in clinical trials this approach would be a great advance on current procedures that usually imperfectly restore lost function within months at best.”

According to Science Daily, “The team [of scientists] were able to repair severed sciatic nerves in the upper thigh, with results showing the rats were able to use their limb within a week and had much function restored within 2 to 4 weeks, in some cases to almost full function.”

“We believe this procedure could produce a transformational change in the way nerve injuries are repaired,” concluded Bittner.

So how does this relate to Multiple Sclerosis?

In multiple sclerosis, once the myelin is removed from our nerves, we develop lesions in places in our nervous systems which act similarly to having severed the nerve completely sometimes. It’s entirely possible that they have found a new treatment for the symptoms that those of us who suffer with MS must endure.

For folks who can no longer walk, I would think that this procedure might prove to be helpful. At least, this article gives me reason to have hope.

Fatty Foods May Cause Brain Lesions In Your Hypothalamus.

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According to a study just released in the Journal of Clinical Investigation, consuming a diet filled with high-fat foods could lead to multiple sclerosis, with the lesions appearing in your hypothalamus.

In the study, scientists fed rats a high-fat diet that is typical in the United States and were astonished by results that showed them that within 1 day, there was inflammation within the hypothalamus. After an eight month-long extension of this diet, the doctors believed that gliosis occurred while the brain tried furiously to heal from the inflammation.

Gliosis, for those of you without a medical dictionary handy, is just another way of saying “scarring of the nervous system.” It’s the step after demyleniation. Gliosis is the term that is used when a lesion has been created.

To make sure that it wasn’t entirely rodent related, the doctors took 34 obese humans to an MRI machine to check how their hypothalamus activity was looking. They found inflammation and repair activity taking place, but nothing was reported for those subjects regarding lesions or gliosis.

Some scientists believe that, like our pancreas’s insulin jump right after eating, our brains may react similarly with this inflammation. Others are more skeptical, especially since the rodents on a high-fat diet lost about 25% of their POMC cells during the 8 month trial, and those protein cells are critical to regulating appetite.

In any event, it’s clear that there is more research to be done, and that it is wise to watch your intake of fatty foods, not just to keep you fit and trim, but also for your brain health.

Threatening to switch meds just to get help.

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4 days and no posts.

It’s shameful, really. I could at least translate a chapter of the Tao, one might think… but life hasn’t given itself to that, or the posts would be there.

For those of you who are clucking your teeth, know that I have self-berated.
For those of you who are giggling, know that I am smirking as I write this.

It’s hard to believe that I just got off the phone with Shared Solutions, letting them know that it’s been more than a month that I have been without Copaxone on their account and that I am suffering through a relapse – and that if they’re not gonna help me, I’m gonna have to switch meds. Rebif is givin a year free right now, though I don’t know how wise it is to go that route. I am done with my Medrol dose pack, but I am still dealing with numb tinglys off and on throughout my side and top of my chest and my left pinky and ring fingers. It’s weird typing with them, but it can be done — mostly because I know to will my way through it. I’m sleepy all the time. Even with ZipFizz. I don’t care that it’s not Paleo. I’m tired. Very tired.

Right now, I’m just trying to keep going. I don’t think sleeping all day is the answer, much as I wish it was. Instead, I think it involves a smoothie, picking out some recipes to try this week, and convincing Adam to make a trip with me to Trader Joe’s to pick up some bananas and salsa (not to be used together!) and Whole Foods for whatever other ingredients we need.

In the battle of Rae vs. the totally lame, I cannot let lame and boring win!!! Mostly because that means I’m bored. And I can’t have that, now, can I?

Hope all you readers are rockin it out in the free world… or some other awesomely awkward quote that would befit a reading by Paul Rudd. Peace.

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Life Update

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Well, it’s been a while since I did a proper update just on me and not on the diet. There’s a lot going on here.

First, we have a new pair of foster kittens in the house – Tonks and Luna. They’re a pair of black & white sisters who are about 10 weeks old. Tonks isn’t doing too well, unfortunately. She has a congenital defect in her esophagus that makes it hard for her to swallow at this point, so we’re having to feed her KMR using a syringe so that she gets some nutrition, as well as giving her an antibiotic twice a day. It’s really wonderful having kittens back in my life, but I feel so bad for the little one, having such a hard time getting food to her tummy. Adam and I are doing our best with her.

This is Tonks

This is Luna.

Then, there’s the relapse I’ve been going through. I just finished my last day of a Medrol Dose pack yesterday. Corticosteroids stay in your system for a bit, though, so I have some energy this morning, thank goodness. I really need to make some coffee though. I wonder, honestly, if I would have had this last relapse if I had been on Copaxone. It’s now been a month without it.

I didn’t intend to go off Copaxone until we were trying to conceive a child, but sometimes things just happen. Dr. Analytis took his sweet time calling in a verbal prior authorization, so I couldn’t get my December meds for the December cost, and ACS (the new pharmacy working with Shared Solutions) has yet to call me about getting me the meds for January — and it’s already past the 15th. It makes me wonder how serious they are about keeping people on their medication. I can tell you, I truly do not miss giving myself an injection every night.

Hey – on a multiple sclerosis note – a friend of mine sent me a link to an article that was pretty cool just the other day: MS damage washed away by stream of young blood. Apparently, giving younger blood to mice stimulated myelin repair, suggesting that similar type blood transfusions may help humans. So, another non-pharmaceutical “win” in the MS column.

Other than that, life’s been a lot of napping, practicing/playing guitar and piano, watching old TV shows and new cartoons that I didn’t have time for in high school/college/law school, and hanging out with my favorite pup, Brisco. Right now, I’m on season 2 of Buffy the Vampire Slayer. I’ve finally talked myself into watching it because my good friend Deb (and so many of my other friends) are fans, and it’s campy in that non-offensive way that says, “Go ahead, make fun of me. I’m already too dumb to care.”


What? ;)

Adam and I are still enjoying the Sims Medieval – Pirates and Nobles. It’s a cute game. Very choose-your-own adventure. It takes most of the good parts of Sims 3 and puts it with the structure that Sims 3 was really lacking for folks who enjoy Adventure games.

This is from someone else's game, but it's still totally cool!

Other than that, not much is going on. I’m still making earrings, but I haven’t been posting them on Etsy because I still haven’t taken the time to properly market my shop. I’m still really enjoying finding and creating Paleo recipes… and that’s about life in a nutshell right now.

Pity Party for One

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I am hurting today, and I’m taking a social media break. I never feel more lonely than when I’m in physical pain and am actually alone. I have a doctor’s appointment at 3:30, and it doesn’t seem to matter what I do to distract myself, nothing really can get my mind off of how achy I am all over, and how my side and feet are all pins and needles and my lower back feels like it’s on fire.

In CA, we could just go to a dispensary and get some medicinal cannabis to ease the pain of this, but it’s illegal in Illinois for some reason, even if you have MS.

Adam would joke that I’m “soupy shorts” but I think the word for it is straight up “mopey.”

My Real Hope: No Dairy, No Legumes, No Grains = No Shots

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My copay for Copaxone this month is $539. That’s just the copayment, keep in mind. Copaxone is anything but an inexpensive medication.

Social Security gives me $643 a month to live on, so until and unless I get some assistance from Shared Solutions, I am without my DMD. I mean, while I could see what living on $104 for the month would be like, I doubt it’s the lifestyle that any of us wants me to become accustomed to.

Happily, I can report that being without Copaxone has not lead to any ill side effects. If anything, I feel better not having to give myself a shot every night before bed. The nightly “bee sting” is something I can happily do without, though I’m not sure how it’s affecting my brain chemistry to be completely honest.

One thing I’ve always hated about taking the drug is that it’s supposed to reduce the formation of new lesions and relapses by up to 40% – but you just have to trust em on that. You’re still gonna get new plaques and you’re still gonna have relapses. You’ll just have fewer. PROMISE. Just keep poking yourself with needles… *smirk*

It really does go to show how broken our system is, however. My monthly living stipend from the government doesn’t even cover the copay on my drugs, let alone the cost of the pharmaceutical copays + the cost of copays for my doctors visits that I need to go to just to keep me functional. And the government is the entity choosing the plans available through Medicare, so they know exactly how much I’m paying and why. You’d think that they would take those things under consideration. I mean, it’s not like you can fake multiple sclerosis or the seizure disorder I have. The lesions show up on the fMRI scans. The seizure activity shows on ictal spec and on EEG… so it’s not like I’m using government funds for lollipops and hookers. (I’m not in Congress! Sheesh!) Based on that, if I were doing the algorhythm for fund allocation, I would put something in the “Extra Help” fund for folks like me.

But that’s because I’m me, and I need extra help. :)

Or do I? I mean, I am on this fantastic new diet… and Dr. Wahls hasn’t needed any DMDs for some time.

Maybe I’ll make myself some kale chips, meditate a little while they bake, and see if I can’t save myself and my country some money by attempting to control this disease with diet.

I mean, what’s the worst that could happen? I’m only gambling with my brain. I could do worse with Malort.

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A New Hypothesis: MS as a Metabolic Disorder

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in the December 2011 issue of The Quarterly Review of BiologyDr. Angelique Corthals, a forensic anthropologist and professor at the John Jay College of Criminal Justice in New York, suggests that MS is not an auto-immune disorder, but rather that it is caused by faulty lipid metabolism.

The Lipid Hypothesis

Dr. Corthals article asserts that the basic cause of MS can be brought back to transcription factors in cell nuclei that control the uptake, breakdown, and release of lipids (fats and similar compounds) throughout the body. Disruption of peroxisome proliferator-activated receptors (PPARs), causes a toxic byproduct of “bad” cholesterol called oxidized LDL to form plaques on the affected tissue. The accumulation of plaque in turn triggers an immune response, which ultimately leads to scarring. This is essentially the same mechanism involved in atherosclerosis, in which PPAR failure causes plaque accumulation, immune response, and scarring in coronary arteries.

“When lipid metabolism fails in the arteries, you get atherosclerosis,” Corthals explains. “When it happens in the central nervous system, you get MS. But the underlying etiology is the same.”

So basically, if I understand Dr. Corthal’s writings correctly, instead of screwing up your heart, the diet you’ve been eating has been screwing up your brain. (Heck, it may have been doing both!)

A major risk factor for disruption of lipid homeostasis is having high LDL cholesterol. So if PPARs are at the root of MS, it would explain why cases of the disease have been on the rise in recent decades. “In general people around the world are increasing their intake of sugars and animal fats, which often leads to high LDL cholesterol,” Corthals said. “So we would expect to see higher rates of disease related to lipid metabolism—like heart disease and, in this case, MS.” This also explains why statin drugs, which are used to treat high cholesterol, have shown promise as an MS treatment.

The lipid hypothesis also sheds light on the link between MS and vitamin D deficiency. Vitamin D helps to lower LDL cholesterol, so it makes sense that a lack of vitamin D increases the likelihood of the disease—especially in the context of a diet high in fats and carbohydrates.

This weirds me out a little as I had high cholesterol as a child but not as an adult. I know I’m not everyone.

Dr. Corthals’s framework also explains why women are more apt to get multiple sclerosis than men. It has to do with how our bodies metabolize lipids. Men metabolize them in their vascular tissue, while women’s bodies are more likely to metabolize it differently.

Dr. Corthal’s said, “[W]omen metabolize fat differently in relation to their reproductive role. Disruption of lipid metabolism in women is more likely to affect the production of myelin and the central nervous system. In this way, MS is to women what atherosclerosis is to men, while excluding neither sex from developing the other disease.”

There are several other risk factors for reduced PPAR function: pathogens like Epstein-Barr virus, trauma that requires massive cell repair, and certain genetic profiles. In many cases, Corthals says, having just one of these risk factors isn’t enough to trigger a collapse of lipid metabolism. But more than one risk factor could cause problems.

“In the context of autoimmunity, the various risk factors for MS are frustratingly incoherent, but in the context of lipid metabolism, they make perfect sense.” Dr. Corthals said.

Research is necessary to fully understand the role of PPARs in MS, but we all hope that this new understanding of the disease could eventually lead to new treatments and prevention measures, and maybe even a cure.

In any event, as the scientific community known as “they” go on and study this hypothesis, I’ll be sticking to the Paleo Diet to bring down my inflammation by staying away from dairy, grains, and legumes, lower my LDL cholesterol levels by sticking with lean meats and lots of fresh veggies, and keep up my Vitamin D levels with fresh whole food, time outside, and supplements.

We might not yet have a cure, but we certainly have ways to help ourselves in the meantime.

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Wahl’s Wednesday!

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What’s up, buttercups?

This Wednesday, I’m highlighting the Wahl’s Diet, another one of those fantastic “get rid of your MS symptoms through food” solutions that has good science behind it.

About Dr. Wahls

Created by Dr. Terry Wahls, a professor of medicine at the University of Iowa. The Wahl’s diet is based around the idea that food is the key to restoring health.

This is a FUBU diet! (For us by us!) Dr. Wahls has secondary progressive MS – one of the biggest, baddest, scariest form of MS you can get. It’s the one where you start becoming disabled and it just gets worse and worse. No remission. She actually went to the trouble of reteaching herself nutritional medicine to develop this diet which focuses on eating foods that give your body the basic components necessary to build myelin and to feed your brain the vitamins and amino acids that it needs to thrive instead of decay.

The Wahls Way

The “Wahls Way” is 9 cups a day of vegetables and fruits, 3 cups of greens, 3 cups of sulfur rich food, and 3 cups of color.

Keeping in mind that the good ole FDA has not evaluated any of the statements made regarding this diet, and that I got my info from a transcript of one of her talks, we can continue.

Examples of the foods on the diet are: wild fish and grass-fed meats that are high in Omega 3 fatty acids; green leafy vegetables and mushrooms high in B vitamins; cabbage, broccoli, cauliflower, rutabagas, turnips, radishes, mustard greens, watercress, winter cress, arugula, collards, and kale that are high in sulfur and magnesium; and offal that is high in cobolamin and B12.

A Plateful of Greens: (Full of Vitamins B, A, C, K) Kale, leaf lettuce, spinach, parsley.
A Plateful of Sulfur: (Packed with magnesium!) Mushrooms, cauliflower, garlic
A Plateful of Color: Fruit – (Superfoods are blue/black!) raspberries, blackberries, beets, red cabbage, aronia berries

To feel even better, she suggests going Paleo: no grain, no dairy, no legumes. (like me!)

I’m strongly considering using her proportioning methods in addition to the Paleo diet to try to improve my health like she has. I mean, she went from a wheelchair to bike races. This awesome lady doctor knows whassup. You might even want to pick up her book.

Here’s her talk on Minding Your Mitochondria at TED in Iowa City.

I’m pretty sure she’d like this recipe. It’s for one of my favorite salads that I fix almost once a week!

Rae & A’s Spinach Salad

Ingredients
10 oz baby spinach, rinsed and washed
8 oz bacon, cooked and made into bacon bits
4 oz sliced mushrooms, white or baby bella
1 c. carrots, diced, sliced, or grated
1/4 c. sliced almonds

for dressing
1/8 c. honey
1/8 c. spicy brown mustard

Preparation
Put all the ingredients in a bowl and toss well.
Serve and enjoy.

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I Get By With A Little Help From My Friends.

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It’s hard to believe, but back in 2006, when I was diagnosed with multiple sclerosis, the only person I knew who had the disease was my uncle — and he never talked about it. See, he was (and sometimes still is) a runner! MS hasn’t stopped him from being athletic, which is good, since exercise is a very important part of maintaining good health while having our condition.

You’d think that the first thing I’d do would be to run to him for advice, but I didn’t. I had to figure out things for myself. (Don’t get me wrong. I still called him, but I wasn’t about to hound him to tell me how to make things “better.”) I was astounded by the number of people who said, “Oh my [insert relative] has that!” and how many folks were basically shoving phone numbers in my hand.

Now, anybody who has had a chronic illness can tell you: the first thing you want to do when you get a diagnosis you don’t like is to go into hiding or cocoon. You don’t exactly want to use it as a platform for making friends with perfect strangers… but they’ve got all the secrets and shortcuts to feeling better.

Folks who were diagnosed before you have been to the rodeo! They’ve seen the evil bull-of-medical-destiny knock riders off in less than 8 seconds and watched the clowns get that angry fucker right back in the pen. It’s worth listening to them, in other words.

That’s why I was so excited when I found out that there is a Facebook group for people in the Chicagoland-area who are in their 20s and 30s who have MS called “Empowered Living.” It was a great big ole positive for the move, as I now have an online support group of locals who deeply understand what life’s like for me, who are all within an hour’s drive! There’s another group on there called MS is BS where our misery loves company, too.

It’s one thing to chart your physical symptoms and have forums on Patients Like Me, but having an age and locality specialized support group has made a big difference in feeling like I’m not alone.

Truly, these online support groups remind me of when I was younger and made friends on Shadowscape and on other BBSes. All of us kids in the same age range had the similar hobby of computer geekery. Here, we have similar lifestyles and a condition that keep us comrades in the War against Whiny-ness.

On G+, I even have circles just for my MS buddies!

What about you, readers? Do you have any online MS or epilepsy support groups that you love?

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