News of the Rae

Today, I was thinking about how much I miss actively participating on LiveJournal. What I really have been missing is reading about what’s actually going on in my friends’ lives (as opposed to looking at memes about politics, sarcasm, and incorrect grammar), and writing about what’s going on in mine.  Twitter and FB are absolute shit for emotionally meaningful communication, and the only way for me to remedy things is to do some writing myself and to reach out to friends on the phone or Skype.

Medical Insurance Is A Lot Of Work

This week has been fucking crazy. I’ve gotten calls from almost every medical care provider I’ve worked with in the last 3 years because Humana was given incorrect information by BCBS of MN with regard to my coverage, and they sent out letters to those providers requesting a refund of the money they paid for my medical care.  You can just imagine how many providers I’ve seen in 3 years with my health being the way it is. Needless to say, a tiny mistake turned into a ridiculous clusterfuck (and one hellacious panic attack) for me.

See, BCBS does identification numbers weird.  Our family has 1 identification number and 3 member numbers, one for each of us. When CMS (Centers for Medicare & Medicaid Services) and Humana asked BCBS how long I’d had coverage, they only provided the identification number (because, apparently, all the other insurance companies have unique identification numbers for each person), without knowing that there were 3 members under that number. This lead to a simple, but unfortunately large, misunderstanding, since Adam’s had BCBS since 2011. It also lead to about 30 minutes of actual talking and 4 hours of sitting on hold to clear this shit up.

insurance

So accurate that it hurts.

In the end, it all boiled down to BCBS needing to fax a letter to both Humana and CMS letting them know that my coverage only started in January of this year. I just had to call back and forth between the different organizations and talk to different CSRs, explaining the situation over and over again. (For the record – customer service at BCBS is much faster to get a hold of and to work with than that at Humana.)

But I learned important things!  Like that every insurance company has a department devoted to the coordination of benefits, and that if you are on Medicare or Medicaid and you purchase private insurance or change providers, you absolutely must call CMS (at 1-855-798-2627) and also let their coordination of benefits department know, so your billing doesn’t get all jacked up.

I also learned that if you have Medicare (or Medicaid), and you choose to purchase another policy from a private insurance company, then the private insurance will always be your primary insurance, and Medicare (or Medicaid, or whatever other state-based insurance) will be your secondary.

Pharmaceutical-Grade Supplements Are Totally Worth It (For Me).

Also filed under “crazy” this week (but in the crazy GOOD category), I weighed myself after 2 weeks on the diet and supplement regimen prescribed to me by the endocrinologist I saw at BodyLogicMD.  I lost 7 pounds!  That’s a tenth of how much I want to lose, and it happened without any frustration.

This may not seem like the biggest deal in the world to anybody but me, but I seriously have been trying to lose weight for years with no success. I went paleo for months at a time. I weightlifted. I tried South Beach. I tried doubling my cardio. I tried calorie restriction, eating 1000 calories a day or less for a couple of weeks.  I  GOT PREGNANT AND HAD A BABY, and still had no change. (I seriously gained a total of 18 pounds with the pregnancy and lost 10 of it when Henry came out, and went right back to the same weight I had started at within a week.)

But now, I have movement on the scale, and all I’ve been doing is taking the supplements (prescribed based on deficiencies that showed up in my bloodwork), eating small meals every 3 hours (just like during pregnancy), drinking at least 64 oz of water a day, and not eating bread or pasta. I’ve been eating rice. I’ve been eating potatoes. I haven’t been working out. And the weight just  disappeared.

Another bonus: I have a ton of energy that I haven’t had in years. It’s amazing to me. I didn’t even expect that it would affect my fatigue… but it has.  There have been days where I didn’t even feel like I have MS. I mean, I went 2 whole weeks without an energy drink, or even 2 cups of coffee.  I don’t think that’s happened in the last 10 years.

But What About BioIdentical Hormones?

The doc at BodyLogicMD also prescribed me some bioidentical hormones to help with MS and seizures.

Based on the studies on estriol that have come out of UCLA, she put me on an estriol cream. It looks like it should be as effective at staving off relapses as Copaxone, at least for the first year.  I start it tomorrow.  I’m hopeful that it will be just as good as a DMD.

I’ve been very lucky not to have any progression since coming off Gilenya in February of 2014 to conceive Henry.  Dr. Javed wants me back on something if we’re not actively trying to conceive, but I have yet to try a disease-modifying drug for MS that isn’t somehow worse than the disease itself — so I’m keen to give Estriol a try, since the second and third trimesters of pregnancy were very much like a vacation from MS.

I’ll be starting a daily progesterone pill on Day 12 of this cycle to help combat catamenial  (read: caused by hormonal fluctuations around menstruation) seizures. When I was pregnant, I went for months at a time without a seizure. It is my most profound hope that I can return to a life where seizures are a “sometimes” thing and not an everyday occurrence.

I’ll be sure to let everyone know how these therapies affect me.

But for now, my honey just got home, and I wanna go give him kisses. ❤

love

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There’s Never Been A Better Time To Have MS.

My good friend Katherine likes to say, “There’s never been a better time to have MS” when we read about the research and treatments that are coming out to help those of us who suffer with this disease. This last week, however, has been gob-smacking amazing. This week has shown us some real steps forward towards curing MS.

Scientists find “off” switch for auto-immune function.

Yeah, you read that right. Researchers out of Bristol University have discovered how to stop our immune systems from attacking our own bodies. You can read all about it here.

“Scientists were able to selectively target the cells that cause autoimmune disease by dampening down their aggression against the body’s own tissues while converting them into cells capable of protecting against disease.”

This news is ridiculously fantastic because, if their findings are correct, it doesn’t just mean an end to multiple sclerosis, but an end to (or at least effective treatment for) 159 diseases.

To give you an idea of the scope of how many people that affects positively, it’s estimated that 2.5 million people in the world have multiple sclerosis, and it’s considered one of the more rare autoimmune diseases. Crohn’s disease is estimated to affect twice as many people… and in 2010, there were an estimated 34 million people living with HIV. So right there, with only 3 diseases being represented, you’re looking at 41 million people who have a reason to be hopeful. That’s equivalent to the entire population of Kenya. To contrast, the largest city in the United States (New York City) only has 8.4 million.  Los Angeles has fewer than 4 million. Let that sink in for just a second.

But wait, that’s not all! Let’s repair some myelin, safely.

If it weren’t enough that they may have found a way to stop MS in its tracks, they also may have found a way to reverse the damage without horrific side effects.

BIIB033, a monoclonal antibody targeting the LINGO-1 remyelination signaling block, has passed phase 1 safety tests.

“The anti-LINGO-1 trial is likely the first of many that will test drugs that have been shown to enhance remyelination in [mouse] models,” wrote Pedro Brugarolas, Ph.D., and Brian Popko, Ph.D., of the University of Chicago, Illinois, in the editorial. “Soon we should know whether this approach will provide benefit to patients with MS, which would be the first evidence that enhancing myelin repair may alter the course of this disease.”

So not only can we possibly stop MS from progressing, but we might be able to heal the lesions that it created and return lost function. The only thing left would be to stop it from ever occurring in the first place.

But wait, there’s more!

So we can stop auto-immune function, and there’s hope that we can repair myelin… but what if repairing myelin doesn’t get the job done? That’s where technology comes in.

Scientists have been able to bypass the spinal column non-invasively and trigger walking. You read that right. In the last two weeks scientists have also figured out how to help parapalegics regain use of their limbs. Read all about it here.

Japanese researchers have created an “artificial neural connection” (ANC) from the brain directly to the spinal locomotion center in the lower thoracic and lumbar regions of the spine, potentially one day allowing patients with spinal-cord damage, such as paraplegics, to walk.

We live in SUCH a cool time. I’m very hopeful for a future where no one has to suffer from MS at all.

yayscience

Hello, Gilenya…

Gilenya

Hello, Gilenya!

Thursday, August 29, 2013, I started a new MS medication – Gilenya.

So far, the most annoying part of being on the once-a-day drug is that it required an initial observation period.  During your first dose, for your safety, you must be monitored for 6 hours.  For me, that meant being at the University of Chicago Medical Center infusion suite at 8 a.m. By 8:30, I had taken my first dose, and was sitting around waiting for anything to happen… anything at all.  Every hour, the nurses ran my vitals to make sure that my pulse wasn’t dropping to a worrisome level. The whole time I was at the hospital, my pulse stayed between 90 and 99 and my blood pressure remained in that annoying place where it tends to stay — just high enough to be considered high, despite taking medication, but not high enough to cause any concerns. By 3 p.m., Adam and I were back on the road to get home.

A few hours after Adam and I left the hospital, we went to the gym to do our regular Thursday afternoon cardio session. We both figured that if nothing had changed at the hospital, there was no good reason to take the day off from our physical fitness routine. Despite that hope, I started feeling really awful about 5 minutes into my usually 20 minute long jog on the elliptical trainer.  When Adam saw how hard I was pushing just to stay on the machine, he called it a day.  We went home and checked my pulse with the blood pressure wrist cuff… 68.  Now, 68 is a totally healthy pulse to have. It just happened to be 30 beats per minute less than what my regular resting heart rate was, so it made sense that I was dizzy and very tired. The Gilenya literature had let us know that pulse slowing could occur up to 24 hours after taking the first dose, so we followed the procedure we’d been given.

Adam called the Gilenya Go! program help line for me, and the nurse said to call my doctor… so we called. We were connected with the neurology resident that was on-call and were told that if my pulse dropped to close to 50 to call them back.  Thankfully, the lowest that my heart rate got that evening was 59.

Since that first night, I haven’t had any problems to speak of. My “normal” resting heart rate is now in the low 70s, and I figure that’s probably better for my body overall.  I haven’t had any other side effects that I can think of, and I’ve been enjoying having a medication for my MS that doesn’t appear to be negatively affecting me at all.

Of course, nothing in life can be totally simple… the Universe had to spice it up.

FDA warns of PML case connected to Gilenya

It was literally the same day that I started this drug that a warning came out from the FDA that Gilenya may cause PML, a rare and often lethal brain infection caused by the John Cunningham (JC) virus that damages the fatty covering of the brain called myelin.

PML had previously only been associated with Tysabri, because developing PML is a known risk of taking the drug, and 2,582 Tysabri patients have been recorded as developing the infection.

Fortunately, Novartis, the maker of Gilenya, does not believe that the diagnosis of PML occurred because of the patient’s use of Gilenya. In a quote from MedPageToday.com, Novartis said “‘MRI reviewers’ had examined brain scans taken before the patient started on fingolimod and determined that the patient might already have had PML, [prior to starting Gilenya] because lesions seen in the scans were “atypical” in MS.”

So, I’m not worried about developing PML.

Side Effects?

Gilenya has some serious potential side effects: slowed heart rate, increased risk of serious infections, macular edema, breathing problems, liver problems, and increases in blood pressure. The most common side effects of Gilenya are headache, flu, diarrhea, back pain, abnormal liver tests, and cough.

So far, for me, I’ve only experienced a slowed heart rate. It makes working out a little more difficult, but overall, it seems benign.  The only thing I’m actually worried about is increased blood pressure, since I’m already hypertensive.

I’ll be sure to keep everyone in the loop and let you know if anything changes, but for right now, Gilenya seems great. 🙂

Tecfidera & MS Diets

It begins.

It begins.

Tecfidera & Me – The Beginning

Wednesday of last week, I received my shipment of this month’s Tecfidera. I decided to start it that night.

So far, it hasn’t been bad.  I take my pills with food (breakfast and dinner), and I’m already on Prilosec, so I haven’t had any stomach issues.  I have, however, experienced flushing a few times, and it feels more funny/unusual than upsetting. It’s kind of weird to have really hot ears out of nowhere.

I’m still not used to going to sleep without giving myself an injection.  Every night, I climb into bed and feel like I’m forgetting something important. I’m sure I’d get more used to it if I would just throw away the 5 sharps containers I have sitting on the nightstand next to me.

One thing that has already changed in my life, thanks to this drug, is that I am consistently eating breakfast. It still feels weird every day to eat prior to getting on my computer. I don’t know when in my life I actually stopped eating breakfast, but I’m pretty sure it was somewhere around 1994, when I had study hall 1st period during my freshman year of high school, and breakfast was a pack of peanut M&Ms and a Dr. Pepper from the school’s vending machines. (Hey, I was in band, marching with a 30 pound bass drum 6 days a week. My metabolism could somehow handle it then.)

The Wonderful World of Weight-Loss

Unfortunately, my metabolism is nowhere near as good as it was when I was 14. I currently am tracking my calories on MyFitnessPal and am following their suggestion of keeping my caloric intake below 1600 a day. I’m also working out pretty hardcore: doing weightlifting & 20 minutes of cardio 3 times a week and doing 30 minutes of cardio or more on the off days. You would think, after a month of that sort of activity, that I would have seen some movement from the scale.  I mean, I have been working out at least 3 times a week for 3 months now.  But the scale sits at 214 and will not budge for anything.

That’s not to say that I haven’t seen improvement. When I started working out, I was doing most of my weight-lifting exercises on the very lowest weight setting (usually 15 pounds) – and I’m lifting much, much more weight than when I was starting. I also couldn’t do a full 10 minutes on the elliptical trainer on level 1 without having to stop because of fatigue, and now I can rock out 20 minutes on level 10 without thinking about it. As far as measurements go, I’ve lost an inch from my arms, an inch from my waist, 2 inches from my hips, and 2 from my thighs. So, I am seeing improvement… just not on the scale. My relationship with gravity has not changed. And for whatever ridiculous and infuriating reason, that number, staring me in the face, drives me mad. It feels like the scale itself is saying to me, “You’re not trying hard enough. Do something different.”

Diets and MS

Of course, the first thing that comes to mind when thinking about weight loss is changing your diet. I’m already limiting my caloric intake to the amount that science says ought to make a difference. I started thinking maybe I needed to change what foods I am eating. I already limit my sugar and fat intake to 30g and 50g respectively per day. I already cut out processed foods.

Then, I read this article that talks about yet another doctor (Dr. Jelinek)  who has come up with a diet that he proclaims “cures” MS.  It just makes me shake my head and realize that a big part of why I am so frustrated with this situation is that I have tried so many different diets all throughout my life, with none of them making a real, lasting difference in my life.

I started with Weight Watchers when I was 8. That went nowhere. As a teenager, I tried Atkins. I actually almost passed out on the first day because my diet at the time was comprised primarily of bread and I had “nothing to eat.” After the first week, I decided it wasn’t worth it.

Once I got diagnosed with MS, I tried the Swank diet for several months with zero results. I asked my neurologist at that time what she suggested, and she said to eat a low-fat, high-fiber diet as suggested by USDA. Time passed, and I ended up with a seizure disorder. My epileptologist suggested that I try the ketogenic diet to help stop the seizures. But, since my seizures were caused by MS, that didn’t help either, so I went back to a traditional western diet.

Then, in 2010, I tried the paleo diet, in earnest – for several months. I had more energy, less pain from inflammation, and I lost weight without exercising… but it was expensive, took forever to make meals, and family was not supportive of it at all. Every week, when we’d visit Adam’s parents, there was some other reason that one of his family members would say we should quit the diet. We were presented with homemade cookies, bread, or sugar-added fruits or veggies that had been lovingly prepared that we were faced with, and it gets really hard, emotionally, to continually be telling your in-laws, “I don’t want to eat what you’re offering me.”  So, I caved in and went back to eating “like a normal person.”

Dr. Wahls shortly thereafter came forward with science that says eating a paleo diet, including the following “recipe” for daily vegetable intake can vastly improve your MS:  3 cups of cruciferous and dark greens, 3 cups intensely coloured: 1 cup red vegetables / fruit, 1 cup blue black vegetables / fruits, 1 cup yellow/orange vegetable / fruits, and 3 cups others including: 1 cup mushrooms / onion family (for organic sulphur), and seaweed for iodine and trace minerals. (source)

Many of my Facebook friends gave her formula a try, and while it hasn’t hurt any of them, I have yet to hear about any significant improvements.

Now, Dr. Jelinek says that we should be eating only eating only vegetables, fruits, nuts, legumes, seeds, pulses and grains (so most pastas, rice, wheat, oats, corn, barley, etc), fish and all other seafood, & egg whites. This means those of us with MS should avoid:

  • Meat, including processed meat, salami, sausages, canned meat
  • Eggs except for egg whites
  • Dairy products; that is, avoid milk, cream, butter, ice cream and cheeses. Low fat milk or yogurt is not acceptable. Cow’s milk and dairy products are best avoided altogether as the protein is likely to be as much of a problem as the saturated fat, given recent evidence. Soy products or rice or oat milk are good substitutes.
  • Any biscuits, pastries, cakes, muffins, doughnuts or shortening, unless fat-free
  • Snacks like chips, corn chips, party foods
  • Margarine, shortening, lard, chocolate, coconut and palm oil.
  • Fried and deep fried foods except those fried without oil or with just a dash of olive oil. It is important not to heat oils if possible.
  • Most fast foods (burgers, fried chicken, etc.)
  • Other fats and oils

Then there’s the MS Recovery Diet. It’s based on the idea that there are five common trigger foods that can set off the symptoms of MS–dairy, grains containing gluten, legumes, eggs and yeast.  This would seem to be mostly in line with both Dr. Wahls’ advice and the paleo diet.

Lastly, there’s the MS Diet for Women which was designed by an MS sufferer who has, as I have, gone through all the science on diets and MS and decided to smash them all together for the best result.  This diet has you avoid dairy/cow’s milk products, gluten and wheat, saturated fats (meaning red meat), heated fats (in any form), caffeine, refined foods (with high sugar levels), legumes, chicken and eggs, and citrus fruit. What are you allowed to eat?  Fruit (but not citrus!), all vegetables, non-glutenous grains, oily fish, nuts and seeds. That’s it. It’s like the paleo diet on crack.

It’s no wonder, when confronted with this many contradictory diets, that I am stymied as to the correct plan of action. This, of course, keeps me from doing anything but limiting calorie, fat, and sugar intake, which is exactly what both of my current neurologists say is all I should be doing.

I’ll let you know if anything changes.

In the Hospital Doing a Video EEG Session

Where are my recipes?!

Sorry for the lack of recent posts. I’m in the hospital right now, doing a video EEG seizure study to find out what the smallest dose of Topamax is that I can be on, so that when Adam and I get pregnant, I will have the smallest dose possible in my system.

See, it’s not so easy, wanting to have a baby and having multiple sclerosis and a seizure disorder.  There are all these extra things that you have to think about that your average person doesn’t have to take into consideration.

Seizure Disorder, Pregnancy, Medication, and Birth Defects

You might think to yourself, “Topamax causes birth defects! I saw that on a TV advertisement for a law firm that is doing a class action law suit! You shouldn’t be on that drug at all during pregnancy!” and you’d only be partially right.

See, your everyday average, non-seizure-having person has a 1% chance of having birth defects with a pregnancy.  With Topamax, it’s a 3-5% chance, and the higher your dosage, the closer you are to 5% – the lower your dosage, the closer to 3%.

Then there are seizures by themselves. They carry their own % chance of birth defects too.

Let’s say I went without seizure meds at all and just prayed to the good Lord that I didn’t have any seizures, and I got pregnant… and then mid-way through the pregnancy, I had a grand-mal seizure, and for 2-3 minutes, the fetus didn’t get oxygen.  That’s one hell of an opportunity for a developmental defect.

I know what you’re thinking. “2-3 minutes without oxygen while in the womb? Is it really that big a deal?”

YES, IT’S THAT BIG A DEAL.  Imagine holding a baby under water for 2-3 minutes. What happens? They drown, that’s what. The womb isn’t that much different. 2-3 minutes without oxygen in the womb could mean brain death.

So we’d rather have my seizure disorder under control on a minimal dose of Topamax with a low percentage possibility of birth defect than roll the dice and hope, for 9 months, with raging pregnancy hormones and multiple sclerosis, that I don’t have a seizure that negatively affects the fetus.

That’s why for the past day and a half, and for the next 2-3 days, I’m living it up at the University of Chicago Medical Center, and am facing my seizures head on, like a fearless Amazon warrior.  Okay… the truth is that I’m facing it more like a whiny, twitchy, little baby from time to time… but I am here, I’m getting the research done, and I am not backing out — and that’s what matters.

So far, so good…

Adam’s been by my side the whole time, and I think the worst of the whole situation has been that the nurses had a horrible time drawing blood from me and putting in IVs.  I’ve got tiny veins that like to hide.

Other than that, of the few seizure episodes I’ve had so far, not a one of them have shown up on EEG yet.  Fortunately, they are on video. I have no doubt that they would have shown positive evidence if we did a post-ictal spec.

Tonight, aside from keeping me off of all seizure medication, they’re sleep-depriving me. (As in, I woke up at 7 a.m., and I don’t get to go to sleep until 4 a.m.)  So far, I’ve only been off medication for a few hours, but the auras of headaches and nausea have already started coming and going, so I’m confident we’ll get some results from this study.  Even if the seizures don’t show on EEG, I know that my doctor will have some information to work with.

I honestly think the hardest thing I’ve had to deal with the whole time I’ve been here is the chemical ups and downs associated with coming off of Cymbalta and Abilify, since my last day on the stuff was this past Friday. It makes it harder to be calm and ignore the itchiness of the electrodes that are glued to my scalp and my inability to just move around wherever I want to whenever I want to. (Lemme tell ya, folks, I am not a fan of the football helmet of gauze – or of having to ask for help just to go to the bathroom.)

Eyes On The Prize

If this time in the hospital has been good for anything so far, though, it’s really solidified for me a couple of things.

(1) Adam and I really want to be parents – and want to be good ones at that. &

(2) I’m willing to face the most painful and frightening things I’ve ever experienced for my family. That’s how much Adam and the child(ren) I don’t have yet mean to me.  And that’s how much they should mean. Real love means having the strength to face your fears.

 

U.C. Irvine immunologist is getting the chance to create a new line of neural stem cells!

According to News Medical, an immunologist at U.C. Irvine has been awarded a $4.8 million grant to create a new line of neural stem cells to treat multiple sclerosis!

The novel approach of creating this new line of neural stem cells is that it not only would encourage the deterioration of myelin to slow or halt, but to even potentially be repaired!

Neural stem cells are hypothesized to be able to repair not only damaged myelin but also the entire damaged nerve cell, thus restoring abilities to those of us with multiple sclerosis who have been disabled by the disease.

This is considered one of our best hopes for regenerative therapy, and so I’m very excited about this treatment, especially for the thousands out there who are more affected by the disease than I am.

HAPPY WEDNESDAY! 😀

Scientists Have Found A Way To Stop MS Progression!

I am too excited to actually write my own article about this! So, I am going to commit an act of blatant plagarism and then link to the original site. I am sorry about being so lame, but they have figured out a way to stop the progression of MS simply by blocking a protein! THIS MEANS THAT FOR PEOPLE LIKE ME, WE SOON WON’T HAVE TO WORRY ABOUT GETTING WORSE ALL THE TIME!!! IT IS SO EXCITING! I am adding in bold in certain areas because I think there are some things that are important to note – all emphasis is added by me.

Professor Claude Bernard and Dr Steven Petratos are two of the doctors responsible for finding a way to halt the progression of multiple sclerosis in patients.

Led by MISCL’s Dr Steven Petratos, also of RMIT University, and Professor Claude Bernard, the research team found that a modified version of CRMP-2 is present in active MS lesions, which indicate damage to the nervous system, in a laboratory model of MS.

The modified CRMP-2 interacts with another protein to cause nerve fibre damage that can result in numbness, blindness, difficulties with speech and motor skills, and cognitive impairments in sufferers.

When either the modified CRMP-2 or the interaction between the two proteins was blocked, using a method already approved in both the US and Australia, the progression of the disease was halted.

Director of MISCL, Professor Richard Boyd said the discovery could lead to new treatments for MS.

“Blocking the same protein in people with MS could provide a ‘handbrake’ to the progression of the disease,” Professor Boyd said.

Dr Petratos said the method used to block the protein was approved for the treatment of other disease conditions by both the US Food and Drug Administration and Australia’s Therapeutic Goods Administration.

“This should mean that clinical trials – once they start – will be fast tracked as the form of administration has already been approved,” Dr Petratos said.

MS Australia estimates that the disease affects more than 20,000 people in Australia, and up to 2.5 million worldwide. The disease tends to strike early in adulthood, with women three times more likely than men to be diagnosed. The total cost to the Australian community of the disease is estimated at $1 billion annually.

The research received major funding from the National Multiple Sclerosis Society of the United States of America and partial funding from MS Research Australia.

Provided by Monash University (news : web)

http://medicalxpress.com/news/2012-04-scientists-handbrake-ms.html