Despite Multiple Sclerosis…

Yesterday, a good friend whom I admire and respect left a link for me on my Facebook timeline. The text that he wrote to accompany the link was “Inspiration of the day.” What followed was a link to an article about a woman who, 3 years after her MS diagnosis, has chosen not to take any MS medication and instead to run a marathon every day for an entire year, finishing the year with a double marathon.

Now, I know this friend pretty well, so I am entirely certain that he had good intentions and was looking to lift me up when he sent me this article. I am not upset with him, and I deeply appreciate that he holds me in his heart and wants to remind me that I am capable of more than I think I am.

That being said, something that people who don’t have a chronic disease often don’t understand is that when you send links about people who have your disease doing incredible (sometimes ridiculous) things, it is not inspirational. It is a form of shaming.  It suggests that the disease you deal with on a daily basis really isn’t that bad, and that anyone with that disease ought to be able to do the crazy-ass thing that this person, who has your disease, has chosen to do.

Diagnosed with MS? Climb Mt. Everest!

I remember when I was initially diagnosed with MS, Teva Pharmaceuticals sent me an information packet, asking me to be a part of Team Copaxone – a bunch of folks with RRMS who do things like climb Mt. Everest, lead a team to the South Pole, participate in the Para-Olympics, and so on… (from the Teva Pharmaceuticals website) “Team COPAXONE® is a group of individuals with RRMS who have different talents and aspirations, yet one common objective: to live the lives they have imagined despite their disease.”

I remember thinking, “I’m finishing law school and am going to take the bar exam despite the fatigue and cognitive problems caused by RRMS. I’m kind of like the folks in Team Copaxone! I won’t let anything stand in my way!”

And I did complete law school.  I even took the 3-day CA bar exam twice.  I didn’t pass either time, though I was close — and I blame the fact that I didn’t pass on the constant seizures I was experiencing at the time. (It’s hard to pass a test when you have seizures that cause you to fall out of the chair you’re in and bang your head on the desk while you’re taking it.) These seizures were caused by MS.  So no matter how much I wanted “to live the life I imagined despite my disease,” I couldn’t.  That doesn’t mean that I didn’t give it everything I had.

It’s not that you’re inferior. They’re just so superior.

When folks with MS get media attention for do amazing things, like training for the Kona Ironman competition, modifying bicycles so they can pedal with their hands and participate in 2-day long bicycle races, continuing to pursue a lifelong dream of being a basketball player with the NBA, have a booming career as the mascot for an NFL team despite heat intolerance, or be a Major League Baseball player, people who are not knowledgeable about the disease think that the rest of us ought to be able to do these things.

To make it worse, you’ve even got fictional characters, like President Josiah Bartlet of the West Wing, messing with the understanding of the disease for your average person.

The bad logic isn’t hard to follow: If there are people who have MS that can succeed as professional athletes or political figures, people with MS really aren’t that disabled. They’re just holding themselves back.

While I wish that were the case, it simply isn’t.

This is what MS does to you.

Multiple sclerosis is different for every person that has it, for many of us, the symptoms are severely disabling.

The most common symptoms of MS (courtesy of WebMD):

“Abnormal sensations: People with MS often say they feel a “pins and needles” sensation. They may also have numbness, itching, burning, stabbing, or tearing pains. About half of people with MS have these uncomfortable symptoms. Fortunately, they can be managed or treated.

Bladder problems: About 8 in 10 people have bladder problems, which can be treated. You may need to pee often, urgently, need to go at night, or have trouble emptying your bladder fully. Bowel problems, especially constipation, are also common.

Difficulty walking: MS can cause muscle weakness or spasms, which make it harder to walk. Balance problems, numb feet, and fatigue can also make walking difficult.

Dizziness: It’s common to feel dizzy or lightheaded. You usually won’t have vertigo, or the feeling that the room is spinning.

Fatigue: About 8 in 10 people feel very tiredIt often comes on in the afternoon and causes weak muscles, slowed thinking, or sleepiness. It’s usually not related to the amount of work you do. Some people with MS say they can feel tired even after a good night’s sleep.

Muscle spasms: They usually affect the leg muscles. For about 40% of people they are an early symptom of MS. In progressive MS, muscle spasms affect about 6 in 10 people. You might feel mild stiffness or strong, painful muscle spasms.

Sexual difficulties: These include vaginal dryness in women and erection problems in men. Both men and women may be less responsive to touch, have a lower sex drive, or have trouble reaching orgasm.

Speech problems: Sometimes MS can cause people to pause a long time in between words and have slurred or nasal speech. Some people also develop swallowing problems in more advanced stages of MS.

Thinking problems: About half of people with MS have trouble concentrating that comes and goes. For most, this means slowed thinking, poor attention, or fuzzy memory. Rarely, people can have severe problems that make it hard to do daily tasks. MS usually does not change your intellect and ability to read and understand conversation.

Tremors: About half of people with MS have tremors. They can be minor shakes or make it hard to manage everyday activities.

Vision problems: Problems with your eyes tend to be one of the first symptoms. They usually affect only one eye and go away on their own. Your sight may be blurry, gray, or have a dark spot in the center. You may suddenly have eye pain and temporary vision loss.

Very rarely, people with MS may have breathing problems or seizures.”

There is no cure yet for Multiple Sclerosis.

The only thing that upsets me more than being presented with evidence that MS doesn’t stop you from doing amazing physical things (for many of us, it does!), is when people send me links talking about people who have “cured” their MS.

None of them have.

Dr. Wahls, for example, has done an amazing job of regaining ability in her body that she had previously lost due to MS, by eating a modified paleo diet. News sources around the world touted her discoveries as a “cure” for MS — but Dr. Wahls will tell you herself that she still has the disease, and that she is managing the symptoms through diet. She still deals with some symptoms from MS, but she’s much better than she was prior to starting her diet regime.

Then there’s CCSVI (which was proven ineffective), stem-cell recipientsbone marrow transplants, and recently, T-cell reprogramming.

Not one of these “cures” is a real cure, but, they are steps towards one.

Why do I get upset when people excitedly tell me about “cures?”  Because every one of those articles about potential medical therapies carries with it a  mixture of false hope and more shaming. These articles contain the implied suggestion, “If the news says this is a cure, you should try it – and if you don’t, then you’re not doing everything you can to fight the disease.”

I’m proud of how I’m doing.

I have gotten accustomed to a life with seizures, thinking problems, sexual difficulties, muscle spasms, fatigue, dizziness, bladder problems, and abnormal sensations — all occurring during the last 6 years while I’ve been taking medicine to slow progression of the disease.

So, no – I don’t think I’m going to be running 366 marathons anytime soon. I sure as shit am not climbing Mt. Everest, and I have no designs on trying to become a professional athlete or political figurehead.  I’m facing the challenges presented to me by my body and am not looking to increase the difficulty of my life.

The fact that, since the constant seizures abated in January, I have consistently gotten myself to the gym 3-4 days a week proves to me that I am not a quitter.

The fact that, for 6 years, despite being initially needle-phobic, I gave myself nightly injections to fight the disease, lets me know that I’m willing to face my fears and do whatever is necessary to maintain as good a level of health as I can.

The fact that I am, once again, following a modified paleo diet because science confirms that it makes a positive difference in the health of people with MS, shows me that I am not lazy or letting the disease “win.”

The fact that I’m willing to try new drugs when they come out on the market, like Tecfidera, despite the chance of horrible side effects, lets me know that I have not lost hope.

Despite multiple sclerosis, I do my best to live a full life.  And to me, that’s all any of us can ask of ourselves.

Who Can You Trust?

One of the things that really drives me nuts about having multiple sclerosis is that there are so many unknowns about the disease.

In Europe, for example, CCSVI (Chronic cerebrospinal venous insufficiency) is widely thought to be a leading cause of multiple sclerosis, while here in America, we still believe it to be largely auto-immune. Because of the difference of opinion, many more people in Europe are likely to get the surgery to fix their bloodflow.

Many people posit that the difference in opinion exists because our neurologists here in America are “in bed” with “Big Pharm” while others say it’s because we’re extra cautious and want to make sure all the appropriate studies are done before having vein surgery that affects our brains!

And then, of course, there are the diets that have been researched and designed to help us! The Swank Diet, the Best Bet Diet, the McDougall diet, the MS Recovery Diet, the Wahls Diet, the Paleo Diet, and the fact that throughout the USA the hardline recommendation is simply to stick to the FDA’s recommended diet for a healthy heart! 😛

Clearly, you can tell my opinion on that. Our neurologists are not food scientists or nutritionists! But they are brain doctors who are looking out for your best interests and will tell you when the work you have done for yourself is making a positive difference in your health.

So, who do you trust? I say trust yourself.

Only you know what your body feels like, so only you will know what difference a change in diet makes to your condition.

I was never an advocate of a diet before I tried the Paleo diet for 6 weeks and saw a massive change in the amount of physical pain I was enduring. Waking up without being in pain after 5 years of waking up in pain was like having a huge burden lifted off my shoulders. Your experience may vary!

But you’ll never know if you don’t let yourself try something different, in earnest, for a significant period of time.

Besides, what do you have to lose?

CCSVI – Chronic Cerebrospinal Venous Insufficiency

It’s been a long time since I said that I was going to make a post, or a series of posts about CCSVI. I started this post way back when I was on an oral medrol pack right now and was going through a ridiculously loooong relapse, I can promise, that I will do my best to link to each source that I got information from, and that I will do my best to explain things to the best of my understanding.

So! First and foremost, the big question:

What exactly is CCSVI, or Chronic Cerebrospinal Venous Insufficiency?
To put it plainly, in people who suffer from CCSVI, the veins responsible for getting blood to flow properly away from the brain and spine are not doing their job. They are, as the title of the condition says, insufficient in their current state. They’re either too small, not there, twisted up and needing to be ballooned out, or they have some other problem.

That sounds like a circulatory system problem. What does CCSVI have to do with multiple sclerosis?
Ah! Now there’s where the story gets both romantic and convoluted.

Dr. Zamboni, the brilliant man who discovered this issue, did so when he was seeking a cure and/or treatment for multiple sclerosis because his wife suffers from it. It’s a totally sweet story, and Canada’s TV5 does the best job of giving you the public interest sappy telling of it, as well as having fantastic TV quality explanations about what CCSVI is.

Check out Canada’s TV5 and their coverage of Dr. Zamboni’s discovery. It’s like watching Dateline or 60 Minutes for those of us who are only used to American network TV. It’ll explain things much more thoroughly than I ever will. I’m a much bigger fan of the brass tacks "What really matters" to friends/family style of explanation.

CCSVI is hypothesized to be the cause of MS.
AND it’s a congenital defect. This means I was born this way, and my body adapted. Dr. Zamboni and the doctors whose research follows his believe that the immune response (MS) to the reflux of blood in the brain and the deposits of heavy metals is that adaptation.

So, what exactly is the Liberation Treatment, then?
Angioplasty, plain and simple, just like they do day in and day out for people who have heart attacks. Only difference: It’s for veins. Crazy thought: Allow proper blood drainage from the brain, perhaps the metals will be removed, and some of the function will return or problems will abate. Not surprisingly, it seems to work.

Unfortunately, sometimes it has to be done more than once because the veins don’t always stay open.

Will it CURE your MS?
No. It is not a cure.

It simply means that my brain will be able to receive and release blood flow normally, as it ought to be able to.

The Liberation Treatment is a treatment for CCSVI. It just happens to make symptoms of MS better. Go figure, you help the brain, problems that happen because of the brain get better. (This is not rocket science.)

I will still need Copaxone to help with my current lesions and to help fight off future lesions. My immune system will still try to eat my nervous system. I will still HAVE multiple sclerosis, but I probably will not hurt as much or as often. 100% of patients who have received the surgery have had more energy and clearer thinking. I might get feeling back in part of my left chest and side. That would be cool. Who knows, it might even help with some of the seizures. It’s helped others.

But is it safe? This is your life we’re talking about…
This is Dr. Salvi (a pro CCSVI-treatment neurologist) from Italy, talking at a conference two weeks ago. Vince, a fellow MS sufferer who is a member of the same CCSVI group as me on Facebook kindly translated the Italian of this video for those of us in the group who wanted to watch it.

Read Below for the translation – the video is in Italian but has English Powerpoint Slides to view.

Dr. Salvi:

      "What interests me, since there has been a lot of bull in these matters, there have been people fabricating things that have never happened. This procedure is simple and well tolerated. Whoever says there has been a death in Italy is a total idiot, (applause,someone holding sign "liberate us") and also people saying its dangerous. I personally have brought a lot of patients to undergo the procedure, and really, come and see for yourself, simple, next.

      "This is the population of the first studies (in yellow). And the most important thing, I always say, and another accusation we have been getting is that we take away the therapies from everyone. We are idiots for performing these procedures, while the only thing patients need is these therapies, and accused us as outsiders.

      "We have not taken therapies away from anyone. We have not taken away any traditional therapies from no one. These are stents, the famous stent they have accused us of putting everywhere and to be the cause of death. There has been one death in the world that had a stent put in, but her death had nothing to do with the stent. We do not have stents for the jugular, so we do not reccomend them."

This is all I can do for now. I’ll put more CCSVI and MS info up later, but I hope this is helpful for anyone out there other than me. I think this is a good start towards improvement for all of us.


*deep breath* Hi there.

So. Again I overwhelmed myself and what started as an entry on CCSVI is now almost 7 pages of word document.

There is so much that goes into it and that I want to explain thoroughly in both medical and laymans terms with the right pictures that I’ve seen on different pages that I keep putting off good entries by starting ones that are like “legitimate” like that and not actually writing entries that I need and want to write. And that’s bullshit. So until I’m done writing that stuff and organizing it, I’m going to still write about my life because, well, I’m starting to have one again, aside from just taking meds and whatnot.

New Therapist, New Therapy Style
Welcome to my care team, my new therapist, Ann. She’s been a PhD for many more years than Amy (my previous therapist of 5 years, who just got hers this past year – and who I’m still very proud of for her achievement!), and her practice focuses a lot more on Jungian techniques, journaling, dream journaling, dealing with childhood traumas (of which I now know I have some to deal with – which was not the case when I was shopping for a therapist w/ Amy). Ann’s technique also pulls from other areas of psychology that I like – cognitive behavioral, talk therapy, and others. She’s got loads of experience working with victims of abuse and with people coming to terms with disability, and while she is older, I don’t feel like I’m talking to a grandmother or someone I have to watch my mouth around. She skews to a tad bit older than my mom/dad range, which is really nice and comforting in that “she-probably-knows-how-to-help-me-from-direct-experience” sort of way. And she takes my insurance, which is very excellent for us financially speaking. So far, she seems fantastic.

My homework from her this week is to keep a dream journal. Usually, I’m Johnny-on-the-spot for things like that, but with all the nightmares I’ve been having and how many times Adam had to wake me last night, I just couldn’t start it yesterday. I figure, since this isn’t school, and since it’s for my own well-being, I can use the “It was my last day on steroids.” excuse and start tonight.

Another bright side is that working with her means that I will have someone reminding me that it’s a good idea to journal if I’m not reminding myself to do it anyway. 🙂

A Little Bit Of Unsolicited Financial Advice
So, I thought about it and having this knowledge is not insider trading because I am part of the public and therefore this is public knowledge. Everybody knows by now that last week Gilenia was approved by the FDA as the first oral disease modifying drug. I’d say, whether you’re planning on switching your medication or not, it’s a safe bet that a *lot* of people will. If I had any money at all to invest, I would throw it into Novartis.

Why? 2 reasons.

Reason 1 – Because pills don’t cost NEARLY as much as injections. How much do you think the insurance companies want to keep paying out? They already hate having to pay the thousands of dollars that our therapies cost them every year — and who can blame them? The cost for our care is INSANE. We absolutely deserve the care, but for an insurance company to pass up an opportunity to reduce costs by what I can only imagine would amount to millions — that would surprise me. Especially when this pill’s been proven to be more effective than Avonex, Betaseron, and Rebif. It makes me wonder if those will even be on formularies soon.

Reason 2 – Because pills don’t hurt like injections do – and many of us are just plain tired of hurting and bruising on a daily/every-other-day/weekly basis. Many MSers just want to stop the shots, and who can blame them? I personally inject myself every single night before I go to sleep. I have to do it then, because otherwise the injection site will rub against my clothes and drive me nuts all day and hurt and get bigger and redder. Yeah. Sexy. Hot. MMmm.

Anyhow – since it *just* got approved, it’s still not on anybody’s formulary, which means that nobody’s got it yet. That means we don’t have the real change in value of Novartis’s stock.

I figure, if they’re going to make money off us, we may as well make money off ourselves too, right? Why not invest in ourselves? Maybe we’ll make enough money to afford to treat our CCSVI. *chortle* Yes, I said “chortle.” It’s what I did out loud just then. It’s when you laugh to yourself in that sort of angsty way that says, “fuckin life… you think you’re funny.” 🙂

The thing is: Life is funny. And I mean truly funny. Why so funny? Because…

I have an audition for a game show on Tuesday.
That’s right. I’ve got a screen test in Culver City to perform on the hit TV game show “Don’t Forget The Lyrics!” and I have MS (which makes you forgetful) and a seizure disorder (that makes me photosensitive at times). High stress situations also increase the likelihood of my having a seizure. BUT I MIGHT MEET WAYNE BRADY!!!! AND I MIGHT MAKE MONEY!!!! So I’m totally stoked. I just don’t know what to wear yet, and I have to bring some pictures with me.

It’s like I’ve been in training for this game show my whole life. Seriously.

Anyway, here’s a link to one guy playing the game if you haven’t seen it: Don’t Forget The Lyrics!

Thank you, Mom and Dad for encouraging me to sing along to the radio all these years! 🙂 Maybe it’ll pay off!

Full of Win or Full of Fail, You Decide.

Wow, today has a lot of ups and downs for those of us with MS. Since I like to end on an up note, I’m going to start with the really shitty:

The National Multiple Sclerosis Society is spending our money on studies about CCSVI designed specifically to prove that there is no such thing, and that helping us have better blood flow to and from our brains won’t help us be healthier or feel better. They are using the money that we raised for them, for our health and wellbeing to conduct studies in the hopes of proving that even if our veins are blocked by 90%, unblocking them will have no effect on us.

Here’s the “links or it didn’t happen proof.”

Pretty awesome, huh?

On the potentially upside, the FDA has voted to approve Gilenia, the first oral MS drug. Gilena is, of course, the marketing name that was given to Fingolimod.

I first started following fingolimod in December of 2008. Anyway, after several years of following friends who are on it on Patients Like Me, Facebook, and also on the blog that I linked to on the prior post, I am avidly and happily awaiting the release of Gilena. It means no more needles and no more sore injection spots! Unfortunately, I’ll be more susceptible to infection, but that just means that I need to be more cleanly. Considering MS happens because of an overactive immune system, worse things have been known to happen. (Then again, what if MS is a vein disease?) I will stay on Copaxone until Anthem/Blue Cross ads it to their formulary.

I wonder how often they update that thing.

Now THAT is more like it!

Up before the alarm by, like, 5 minutes.

Dog fed, watered, walked, and played with.

Already gave a phone interview regarding life with MS and seizure disorder that started as a survey of how I felt about my experience calling Shared Solutions. Suggested to the Teva representative that they throw some money at CCSVI research because I think that Copaxone and CCSVI treatments are not competing goods, but complimentary science that should be studied together. While I was at it, I volunteered to be a patient. *lol*

And it’s only 8:30 a.m.!

If he hadn’t told me he had a headache when I woke up an hour ago, I’d surprise Adam with breakfast in bed.

Instead, I’m going to drink a Mix1 and organize my stuff for today’s Real Property Funfest.

I said it on Facebook, and I’ll say it here too, for posterity’s sake: For the next 48 hours, I don’t care what the book says… I own Blackacre, with my awesome powers of ROCK. There are 5 covenants of title in every general warranty deed, and there should be a black metal song about that. It’s already in my punkin head. *lol*

Always follow the money.

Well, it finally makes sense to me why American media and the American National Multiple Sclerosis Society has been so hush-hush about CCSVI and the Liberation Treatment.

Sadly, America really does value money more than it values people.

Biogen Idec Inc. reported Wednesday its first-quarter profit jumped 23%, thanks to double-digit sales growth for its Avonex and Rituxan drugs.

Sales of the company’s flagship drug Avonex, a treatment for multiple sclerosis, rose 19% to $536 million.

And that was after they raised the price of the already incredibly expensive drug (which cost MS patients $19,896.15 a year in 2007) by 14%. That may not sound like much of an increase, but that means the drug now costs an MS patient $22,681.61, a difference of $27,85.46 a year or $232.12 a month.

Yeah, you read that right.

They raised the price of a drug that MS patients take, knowing that people who are already on it must continue taking it for their therapy to be effective. Essentially, they knowingly chose to extort more money from the disabled. Biogen simultaneously increased their profits while preventing those suffering with the disease they purport to help from having the money necessary to support the research necessary to get the fuck off their drugs – which, I might add, do not cure the disease, and often make our lives less tolerable than they were before we even started taking them.

What’s worse to me is knowing that for many of us, myself included, MS means that we have decreased capacity for work, and so we have to work part time, or in jobs that don’t pay as much as we used to be able to earn. So that $232 means more to a person with MS than your average person. They’re pulling as much money as they can away from people who need their money most. It’s just sick. But there’s more!

Rituxan, an oncology drug which is used to help people with cancer, non-hodgkins lymphoma, lupus, and people with MS who are using chemotherapy as a treatment was also up 19% to $247 million and Tysabri was up to $160 million, which was not as much money as they’d hoped for. It’s not surprising since every time you take Tysabri, you risk getting PML and dying. That treatment is Russian roulette if you ask me. Poor Biogen, you can’t get as many people who are willing to take the 1 in 1000 risk. Tear!

Maybe I’m having a shitty attitude at the moment. Those three medications help SO many people. Obviously! I mean, look – the numbers don’t lie! *lol* And without Biogen, those people wouldn’t have the medicine that they need.

So good on Biogen for doing the R&D and taking care of people – but seriously, if someone from Biogen happens to read this: Don’t raise prices on drugs people need to have the rest of their lives like that. It’s not cool. Especially when they’re already really expensive. We’re all trying to live here. And having MS doesn’t make it any easier to get a paycheck – in fact, it makes it harder. Corporations don’t have to be evil.

There’s no wonder, with those three drugs alone bringing $943 MILLION dollars (That’s nearly a billion!) into Biogen in the FIRST QUARTER of 2010 why Big Pharm would want to block information about CCSVI getting out to MS sufferers in America.

I mean, just imagine how much other companies make off the other drugs – this doesn’t even include Betaseron, Copaxone, Rebif, Low Dose Naltrexone, or any number of other drugs that we are on that we have to take to temper these drugs. Many of us are on several drugs – some because of the other drugs we’re on!

Honestly, I can see that through the goggles of Big Pharm, if we were living in a cartoon universe, MS sufferers would just look like Smiling Rolls of Money asking for help. And really… why would anyone want to change a smiling bag of money back into a normal person?

This is what happens when I’m up late…

I filled out the volunteer questionnaire for the Combined Transcranial and Extracranial Venous Doppler (CTEVD) Evaluation in MS and related Diseases study in Buffalo, NY.

The main goal of the CTEVD study is to investigate the prevalence (frequency) of CCSVI in patients with multiple sclerosis (MS) when compared to healthy controls (HC) and controls with other neurological disorders (OND). Another important aim of the CTEVD study is to investigate the relationship between CCSVI and clinical, magnetic resonance imaging (MRI) and environmental-genetic outcomes in MS patients, HC, and controls with OND.

There are no treatment interventions planned in this study. The study procedures include doppler/ultrasound testing, blood collection, a clinical examination and completion of an Environmental Questionnaire. Interested participants can also have an MRI performed. A subset of these individuals with also have an MRI of the neck veins.