This is my very personal blog about my experiences with Relapsing Remitting MS. I received my official diagnosis on August 23rd, 2012. Read along as I learn about this disease and begin to deal with this new chapter in my life.
I just got off the phone with the nurse from the MS clinic at UBC. Jane actually answered the phone. Shocking! In all the calls I've made, this is the first time I haven't had to leave a message.
"Thank-you for leaving the message for me at home. I understand that Dr Traboulsee wants me to try Rebif at 22mcg per dose."
"Yes"
"I don't feel comfortable with that because of the depression and liver issues. I'd prefer to try Copaxone first."
"Okay, but I won't be able to speak with Dr Traboulsee until next Thursday."
"No problem, I'll call you when I'm back in town."
Pardon my poor skills at catching the excitement of a phone conversation, but I view it as a small personal victory.
I heard from my neurologist's office yesterday. They left a message on my voicemail at home rather than phone me at work and talk with me directly. All this despite my request that they call me at the office. Sheesh.
However, my own pettiness aside...
Dr Traboulsee wants me to try Rebif again, this time at 22mcg per dose instead of 44mcg. I don't understand why a lower dose is going to make a difference - I had just barely finished the titration period and had only had one full 44mcg dose (aside from my accidental double dose) before my blood was drawn on Oct 19th.
I don't want to complain, but I don't know if I can handle going back on that particular drug. The cold/flu symptoms were bearable, but the rapidity and depth of the depression setting in was awful. Would it be wise to go back to those dark places at night, the foreboding, anxious feelings during the day? I'm sure Dr T will advise that there are many meds available to combat depression, but given the issues my liver was having I just don't feel comfortable adding more drugs to its daily diet. And besides, I would like the option to take an Advil to make the injections as comfortable as possible, but I don't think comfort outweighs possible liver damage. Poor liver, I'm trying to treat you well.
I've made my decision. I'm going to go against his advice and request to try Copaxone instead. It's my body - my decision.
Okay, change of topic. Slightly. I've left a message with a psychologist to set up an appointment. Scary. I'm a bundle of nerves even thinking about getting help, it feels like I'm admitting to a great weakness. But I owe it to myself and my family to explore my depression. I don't want to be a member of the MS depression club. I've done some research and have found a few therapists that treat people trying to come to grips with a dignosis of a nasty chronic disease. Let's see how it goes with Dr Tracy. Fingers crossed.
In some ways I am feeling better. Much better. The terrible, suicidal thoughts at night have vanished. Whew. The tightness around my chest, making me feel like I couldn't breathe has eased. Likely, this was some sort of manifestation of anxiety. The sense of urgency to calm down has passed. Reflecting on my recent emotional turmoil, I can hardly believe my complacency in allowing myself to deteriorate so rapidly. I am shocked at how completely the medication took over my mind and body.
I'm still very sore and achy, tired and my kidneys still hurt. But with a bit of self TLC some of these symptoms will improve.
Anyhow, just thought I'd post a quick update before climbing into bed. Sweet dreams.
I thought I was doing well on the new medication. Perhaps I wasn't though. My blood work tests reveal that my ALT (alanine transaminase) and AST (aspartate transaminase) levels are rather high. Almost four times the high end of normal for ALT. What does this mean? According to the Paul T. Giboney, M.D. in his article titled Mildly Elevated Liver Transaminase Levels in the Asymptomatic Patient this means:
Markers of Hepatic Injury and Necrosis
ALT and AST are two of the most reliable markers of hepatocellular injury or necrosis. Their levels can be elevated in a variety of hepatic disorders. Of the two, ALT is thought to be more specific for hepatic injury because it is present mainly in the cytosol of the liver and in low concentrations elsewhere. AST has cytosolic and mitochondrial forms and is present in tissues of the liver, heart, skeletal muscle, kidneys, brain, pancreas, and lungs, and in white and red blood cells.
Here's the nitty-gritty: the figures on my blood work were ALT 189 U/L (normal being <50 U/L) and AST 76 U/L (normal being <35). Common causes, according to Dr Giboney, for elevated levels of ALT and/or AST under five times the normal limit are: alcohol, cirrhosis, chronic hepatitis B, chronic hepatitis C, steatosis/steatohepatitis, medications/toxins, acute viral hepatitis. Man, I really don't care for the company I'm keeping on that list. Now, I wonder, is it reversible?
So, with my glass of water in hand, I'm going to do some more research on how to flush toxins from my liver and get the healing started. I didn't take Monday's dose of Rebif and thought I'd be starting to feel better by today, day 5 med-free. But in general I steel feel crummy. My lower back is hurting a lot and I don't think the whites of my eyes are as clear as they should be. To top it all off I can't seem to warm up, my hands and feet constantly feel absolutely frozen. For the next little while I'll be avoiding any alcohol, ibuprofen, acetaminophen, carbohydrates, and consuming larger quantities than usual of water. Good ol' water... Gotta go - nature calls.
Secrets... Me? Nope. Not about my health - I'm usually an open book.
When I was in the throes of diagnosis I think I spilled the beans to almost every single person I came into contact with. It just happened. I didn't feel that what I was going through was something that needed to be hidden, and being unable to see wasn't something I could hide particularly well anyways.
On Saturday I attended a seminar for people recently diagnosed with MS. This is a clip that was played during the first presentation of the day by the neurologist filling in for Dr Traboulsee:
At the seminar, the topic of when and if you're going to tell your employer came up repeatedly. Oops, I guess I hadn't received the memo that this was something that should be kept under wraps. From what the other newly diagnosed people were saying, it's a disease that one often feels stigmatized by, embarrassed to have, even ashamed of. Really? I missed the memo for that as well. I can understand that many would feel reluctant to tell an employer about their MS if they felt that their job was in jeopardy if they didn't have perfect attendance, or if they were struggling with performance issues. However, I'm in the very fortunate position of feeling quite secure in my job - I can't imagine trying to hide my personal health issues from them.
In retrospect, how would I have explained my inability to see? Can you imagine their thoughts if they had seen my computer screen without being aware of what I was experiencing? How would I have explained that I couldn't drive? Maybe others just would not have gone to work if they couldn't see. Maybe they would have stayed at home and their employers wouldn't have been aware of how profoundly they were affected. Granted, I was the only person at the seminar that had acute bilateral optic neuritis as my first clinical relapse, so perhaps it would have been fairly easy for the others to keep their employers in the dark. One person had only suffered a few twitches a few times and had been diagnosed. Jealous.
Other than the "does your employer know?" topic, I found the seminar to be very relevant. So many of the stories told were similar to my own experiences. I laughed out loud and almost spat out my coffee when one of the speakers told a funny story about their IV steroid treatment at their local hospital. Another person explained that they had odd pains in their arm that felt like bugs were biting them! Me too! It was lovely to feel that I'm not in this by myself, I'm in good company - many of the newly diagnosed are well educated, thoughtful, intelligent people. Craig is a partner at an accounting firm, Robert is a licenced mechanic, Paula was a school teacher, Kat is a professional engineer, and so the list goes...
Many of us have had symptoms for years and were unaware of what was happening to us. Looking back, my tingling and numb toes, facial twitches and repeatedly sore left leg were probably all early symptoms that went undiagnosed because I felt they just didn't warrant a trip to visit the doctor. In all likelihood, the doctor probably wouldn't have recognized them as MS symptoms anyways.
The final speaker on Saturday was Donna, a psychologist. Off the top, she had us do an exercise in self-awareness and recognition of what we have control over. Then she led us through a breathing exercise to help us cope with difficult situations. The examples she used were: a stressful day at work and thoughts of suicide in the wee hours of the morning. Good Lord, was she reading my mind? I truly am not alone if these are her usual examples. Often teary-eyed these days, I was very close to a complete breakdown and had great difficulty in calming my breathing and keeping the tears at bay. Sheesh, I wanted to glean everything I could from the seminar, not run from the room crying. The breathing exercise was followed by a visualization session. I managed not to break down and stayed with the exercise right through to the end. While I didn't verbalize my experience along with the others, I did take a lot away from the sessions. Perhaps I should consider getting some help. Donna explained that as a group, people with MS are more likely to be depressed than those with any other chronic health issue. I believe it. I'm there now. My own mind takes me to terrible places in the wee hours, it's often difficult to acknowledge even to myself the dark and desperate places I've gone to in the night. During the day things are usually much better, but the nights can be awful. On a couple of occasions I've written some of my thoughts as they evolve and password protected the files in fear of anyone else reading them. The next morning I don't even recognize the person who wrote them.
In pursuit of the self-help theme I've joined a support group that some of the people at the seminar have been attending. Can you believe it? Not usually one to be drawn to that sort of activity, I'm surprised to find that I'm looking forward to my first meeting. My new acquaintance, Paula, will be attending and the Patrick, the group's coordinator was relaxed and friendly. I think a few others from the seminar will be there as well.
So, what do I do now with all my new information? Reluctantly, I should admit that I need some help with my mental struggles. See? I used the word should - meaning that I still haven't acknowledged it. Surely I can take something more positive away from the day... Hmmm. I understand white matter a little more clearly that I did previously. There - something positive with which to end this entry.
How have you been? There've sure been a lot of cods and flu bugs going around.
Well, I've had my first cold since being diagnosed with MS. I had heard that cold and flu bugs can aggravate the nerve damage from earlier relapses. They don't cause further damage, but may cause a pseudo relapse. It wasn't too bad though; a little interesting, but not terrible. My vision began to go a little squirrelly, and my left arm and leg have been tingly, but at least I maintained control of said arm and leg and my vision didn't deteriorate to the near-blindness that I had gone through in May and June. So, I just had the typical cold symptoms in addition to the flu-like symptoms from my medication, but luckily most of the symptoms have gone away now. I think my body's even getting used to the Rebif medication. Yay! I'm still very tired. But otherwise - I'm FANTASTIC!!!
On another topic: I've just spoken to Jane from the MS Clinic. I had enquiries about travelling with the medication and also wanted to know about vaccinations. I'm glad to report that I don't need to have a letter from my neurologist or a travel ID card for my trip to sunny Hawaii. I just need to bring the original packaging for the medication with the prescription sticker on it. Oky-doke. That's so easy - I wish more things in life were so straightforward. Also, I'm quite happy that I'll be able to have the flu and shingles vaccinations. Perhaps not at the same time though! Ha!
I'm beginning to feel more at home with my MS. I'm trying to be myself more - not try to conform to my self-imposed version of what I think people expect me to be like. It's a slow process, but I'm realizing that all of my feelings are okay. The good, bad and everything in between. I had a good cry last night (it felt like a weight was lifted off my ribcage afterwards), and I'm also beginning to smile and laugh again as well. My morbid humour is coming through again. Yesterday, while wallowing in the misery of trying to balance some accounts, I joked that a co-worker shouldn't be surprised to find me in a puddle of blood in my office after my slitting my throat. I was shocked to see the expression on their face. Not everybody's familiar with my dark sense of humour. Usually I disguise it, hide it under a rug so-to-speak, but I think with my new quest to be myself, people are going to be hearing more of my morbid jokes.
I feel really, really stupid. Yes, I used that word that in my family we try not to use at all.
When the nurse was training me on using my RebiSmart machine, instead of using the 'training' section of the equipment, he used up the first two 20% doses of the titration process (gradually increasing the dosage from 20% until 100% is reached). He didn't even reset the titration setting when we administered my first 8.8 mcg dose. All my future woes could have been avoided if this simple step had been done.
This is what the schedule should have been and what actually happened:
#1 8.8 mcg: Went fine
#2 8.8 mcg: Went fine
#3 8.8 mcg: Went fine
#4 8.8 mcg: Went fine
#5 8.8 mcg: Machine indicated that it was going to inject 22 mcg. So I backed it out of the titration program and restarted it at 8.8 mcg. The rest of the injection went according to plan. I was aware that there are two types of cartridges for the RebiSmart, one being 22 mcg and the other being 44 mcg. In my naivete, I thought I'd just switch the settings over to the 22 mcg when the time came for the dose to be increased.
#6 8.8 mcg: went fine
#7 22 mcg: Backed the machine out of the titration program yet again. This time I changed the dosage setting to the 22 mcg cartridge. Picture me standing in my kitchen with the bottom part of my jammies top open to reveal my chubby tummy. My foot tapping with impatience as the machine unwound the plunger from the cartridge, then continued to whir as the plunger was wound back into the cartridge for injection preparation. Beep - I'm good to go. After the injection the screen displays some information: injection successful, dosage 22 mcg, time 9:25pm plus a visual representation of the amount of medication dispensed from the cartridge. Uh oh. A third of the cartridge had been used. My heart sank - my theory about the 22 mcg dosage hadn't worked. I had just administered a full dose of 44 mcg (1 third of the cartridge volume). Oh no. It was a very rough night. I couldn't sleep. I felt ill, sore, feverish, listless... At 2:00am I took a sleeping pill and an Advil. At least I got a bit of sleep before heading off to work in the morning.
Called the Multiple Support Program. Anita confirmed that I had indeed administered a full 44 mcg dosage and advised that I keep up with the Tylenol or Advil regimen to minimize the side effects. She's couriering a couple of vials of saline for me to get back into the titration program at the correct dosage point. It was either that or begin the titration from the beginning or continue with the 100% dosages. I'm very glad to be able to use the saline and get myself back on track.
#8 22 mcg: This should go well tomorrow night. I'll have my saline cartridges on hand to get my titration program back on track and I don't anticipate any complications or problems with the actual injection. Whew. Maybe I'll even feel a little better after the injection than I did last night/today. It's been awful.
I need to be a little more clear about the costs involved with my medication. I won't go broke taking it, but it will be a bit of a burden.
Here's the lowdown: through my current pharmacy, the medication costs $1,929 every four weeks. Each box contains four cartridges of medication, each of which contain enough doses for a full week (3 injections). My benefit plan covers 80%, so every four weeks I'll be paying $385.85. So, I could potentially be paying $5,016.05 annually for my Rebif. Luckily, Great-West Life has an agreement in place with Costco where they'll cover 90% of my drug costs if I have my prescription processed through their pharmacy. Therefore, if Costco charges the same amount for Rebif, I could save at least $2,508.03. Sorry current pharmacy, I just can't afford to stay with you - I've gotta go.
In my quest to have costs reduced (I'm kinda pushy that way), I've been in touch with Great-West Life and have made inquiries about their HealthForward program. Luckily I'm the plan administrator for Silver City, so I have the benefit of a little extra information and a personal relationship with our GWL representative. Their pamphlet indicates that for specialty medications they'd be able to set up delivery of the medication directly from the wholesaler to me. I just don't know if Rebif would be considered an eligible medication for this particular plan. I'm waiting to hear back from them, but it sounds like a good idea as it would bypass the pharmacies and eliminate the costs of dispensation and markups. Fingers crossed.
Okay, enough talk about the cost of the medication. B O R I N G. (Daniel would be rolling his eyes and moaning loudly).
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