THIS is the story that I shared as a Patient Advocate (I’m Being Paid To Talk; NO SHIT!!!) for a bit of time, a few years ago. I realize it is a LONG story, but it does give one a clear picture of the journey I have been on. Since it is the “talk” that I gave, about half way down you will find a side note about how I was “censored” by the pharmaceutical company (or their reps) and what changes I made to my story to try and stay within the guidelines.
My name is Meg and I have MS.
I was diagnosed in 2007, on December 21st (Merry Christmas to me!) One of the most common questions I get is about HOW I KNEW – what were the symptoms that led me to go to a doctor. In 2007 my children were 5,7 and 9 and having finished my “having babies” phase, I was on a mission to lose the “baby pounds” and get back in shape. I was very active, frequently went to the gym, got my personal trainer certification and was running between 6-8 miles 6 days a week. My very FIRST symptom was in my right foot. During that summer, I began to have a constant feeling in that foot, and the only way I can describe it is, when your foot goes to sleep, BEFORE you get the pins and needles, it feels heavy (almost like a dead sensation) and THEN you stomp your foot, get the pins and needles and it eventually wakes up. Well, I had the heavy dead part, and I stomped, and stomped, but never got the pins and needles. Just the heavy dead feeling, all the time. I spent a good portion of that summer just stomping. I also remember that when I was in the shower, I would get a tingling sensation up my spine when I bent over to pick up the shampoo. I later learned that the term for this “electric shock” is L’Hermitte’s sign, and that more than likely the hot shower is what brought that one, but at the time, those TWO things led me to believe that I had a pinched nerve. (I don’t claim to be a doctor, but VERY good at the self-diagnosis thing.)
Those two symptoms continued through out the summer – but that was all. I continued to run and train and play with my kids. By September, the heavy feeling had moved up and was pretty much the whole leg, and THEN it started in the left foot. In the back of my mind, I knew something was wrong, that it was more than a pinched nerve, but denial was a really good place for me to visit. By early October I was no longer running, because I was too unsteady on my legs (my balance was terrible) BUT I never mentioned ANY of this to ANYONE. After all I figured it was going to get better. Then, one day, I was at the park with my kids. It was a beautiful “Indian Summer” day and it was warm enough that I was still wearing summer skirts and flip-flops. The ONLY reason that I am telling you WHAT I was wearing on some random day, six years ago, is because of what happened. I was standing on the wood chips, near the play structure, talking with two or three other moms that were doing the same “good momma’ duty of getting the kids out to play, when all of a sudden I realized that I was peeing. Honest to god, full stream ahead peeing. I had absolutely NO KNOWLEDGE of this prior to realizing that my legs were wet and I was then standing on WET wood chips that had been dry just moments before. I mention the skirt, because THANKFULLY the pee had a pretty clear pathway down to the ground and I wasn’t left with the telltale signs of one that has peed their pants, with a soaking wet crotch. The other two women did not even realize what had just happened. BUT I did, and I was mortified, but even more than that, I was scared! People don’t just PEE without knowing that it is going to happen. That is not normal. That night, after the kids had gone to bed, I called my husband (we owned pubs and was at work) I was hysterical and sobbing and probably making NO sense at all. The only thing that he could make out from my babbling was that I peed my pants in public and I was dying. I can imagine that the call was more than slightly confusing for him, as I said, I had not told ANYONE about the other things that had been happening, and so this SUDDEN and complete melt-down must have come as a bit of a shock.
I did have another symptom that had joined in at that time, a tightening around my waist/ribcage (now know it is the MS hug) but at the time, the ONLY thing I could equate it to, is the feeling of the baby moving when you are big time pregnant. When the baby decides to pull off a back flip inside and there isn’t any room left for such shenanigans it is a sort of tightening feeling. SO that is what I thought it was similar too, which led me to thinking – I have a tumor! And it is taking over my uterus and I am going to die.
SO, I went to my gynecologists office, and since I was in such a hurry to have my tumor confirmed and had insisted that I be seen RIGHT AWAY I was not with my regular doctor, the one that had seen me through three births, and knew my calm, happy go lucky demeanor and my high threshold for pain and discomfort – Instead I was with a gal and I feel I can call her that because she WAS YOUNG- as in JUST out of med school YOUNG) She walked in and again, I completely lost it, sobbing and slobbering all over the place. I told her about my tumor and that I probably only had a month to live. Fortunately for me, she didn’t buy that, and remained calm and professional, and asked a million questions about all the other things that had been happening. And at the end – having never even touched me, let alone required me to put my feet in those god awful stirrups’, she told me that I didn’t have a tumor (explained how when a woman is NOT pregnant that her uterus is about “this big” and way down low, NOT up where I was claiming to have the tumor growing – hence the tight feelings. She also told me that I needed to see a neurologist, because everything I was describing were neurological issues….thinking she must have been a really GOOD student!
Although she tried to get me into to see someone in her hospital, I guess neurology was a hot trend at the time because they were booked out six weeks. I remember hearing her on the phone in the hall saying “this patient couldn’t wait 6 weeks” and thinking, thank god someone believes me and was going to be my advocate.
I ended up going to a hospital that is about 30 minutes from my house, and not one that I had ever really even heard of, BUT they had neurologists and more importantly one that could see me. I remember being extremely under impressed by EVERYTHING on my first visit. It was an older office building on the hospital’s campus, so kind of reminded me of my orthodontists office from back when I was a teenager (kind of a 70s décor) but also the exam itself. He had me put on a robe, walk down a long hallway while staring at my legs and feet, put a tuning fork on my toes and then told me to get dressed and meet him back in his office. From these TWO things (might have been a few others, but they were even LESS impressive, like touching my finger to my nose) he deduced that I had Transverse Myelitis. He told me it was fluid in my spinal cord that came from a virus. He then explained it as if my spinal cord were an electrical cord and that cord was for your outside Christmas lights It had a few nicks in the rubber coating on the outside and if it rained or was damp, water might get into the wires running inside the rubber. The electricity MIGHT make it up to the little lights, but it might not, because of those nicks and the water messing up the electrical current and, then lights might flicker or go off all together sometimes. To this day, that is still one of the explanations that my kids use when one of their friends asks about my MS.
The nice doctor signed me up for an MRI – but only a thoracic scan (as that is where he proposed the “water” aka lesions” were.) I do remember that first MRI, being absolutely terrified. I knew NOTHING about an MRI, had NOT googled it didn’t know it was a gigantic magnet, and wondered and worried about why they kept asking me if I had any metal in my body. (Story about MRI and a hole in my head.) The technician looked at the doctors orders and asked, “just a thoracic scan? Not a brain scan?” I remember thinking I DON”T KNOW, ask the doctor!
It ends up that technician WAS smarter than the doctor, because after the scan, I had about 2 hours to kill before returning to his office to talk about the results and I was in Target doing a bit of Christmas shopping when my phone rang and it was the doctor, wanting me to return to the lab to have ANOTHER MRI…this time a brain scan. I told him NO THANK YOU.
When I returned to his office after two hours of shopping he then proposed “I’ll trade you a brain scan for a spinal tap”??? At that moment, I didn’t have a whole lot of confidence in what this good ole doc was telling me. BUT it ends up, he was right to want to do the brain scan – and wrong in not ordering it the first time around. I left that day thinking I had Transverse Myletis, and that it was a TEMPORARY condition that would go away, get better, I would return to “normal” and be back out running! Thanks a lot doc, see you later, bye-bye
And that was all well and good, until a few weeks later when I got a LOT worse – like barely walking and falling down – worse. SO cocky confident me that had strutted out of the office, SURE I wouldn’t be back, HAD to go back and had to agree to the spinal tap. I remember one of the conversations we had He asked, why I didn’t want to have a spinal tap and I replied “uhm, because they HURT” and he said “no they don’t” I then asked, “have you ever had one” and his response was “nope.” Well then how the heck would HE know when he has only ever been on the GOOD side of that LONG needle! My spinal fluid was extracted, bottled up and shipped off to the Mayo clinic to test for EVERY possible ailment under the sun that they could test for. AND I returned to the lab, and subcummed to the brain scan. I did everything the good doc ordered and then I just waited.
The day that the results came back, I went to visit the Poker Playing doctor, and actually by that time, I was feeling better, significantly better – ha see the transverse myelitis is clearing up and getting all better. NOT SO MUCH. I recall walking into his office (still unimpressive) and sitting down. My first comment was “so brain scan all normal and right?” His response was a simple “nope” and that is when I heard the words for the first time as he said “you have MS” NOW this is the point in my story that is making those that are watching and listening to me from the “appropriate corporate image side”, & listening that I adhere to compliance rules REALLY nervous. This is ONLY my second time speaking as a patient advocate the first being last week, when I flew to Bozeman Montana and spoke to approximately twenty people that came to the program. And I told my story, just like I am doing here now. And I wanted to be genuine and really let the audience KNOW what it has been like for me and what all I have been through. And so when I got to this part of the story and I told them exactly what was said when I was told that I have this incurable disease, I DIDN’T “screen” myself, I didn’t put in a bleep, I used the actual word. I didn’t use it flippantly and it is not as if I didn’t think about it – I did – actually a LOT and I decided that it is MY story and it is in fact what I said and then what he said, and just how much that small exchange has effected how I viewed this new journey, from the very start.
But I have been asked, and reminded a number of times by a number of people over the past week – to NOT use THAT word, to alter my story and make it “G” rated. And so I will, but not without saying that by changing it – it DOES make a difference, because although it might be “inappropriate” to say that word in a program when I am representing a major pharmaceutical company – changing it takes away the raw, naked truth of how I felt at that moment in my life. There were NO screens or bleeps, it was my absolute and truthful response.
SO when the doctor said I had MS – my first and only response was “oh fudge” – to which he responded No this is not an oh fudge moment, this is an oh darn it moment. Oh fudge is when you child gets leukemia or your spouse is in a fatal car accident, leaving you to raise your five kids by yourself, but having MS is NOT an Oh Fudge, because you are going to be fine – no one dies from MS.
FOR MY READERS: THIS IS WHERE THE BOMB DROPPED:
DR: You have MS
ME: Oh fuck
DR: No, this is NOT an oh fuck moment, this is an oh damn moment….
and so on…
And so that was it. That brief exchange really truly DID shape the way I looked at having MS. That is not to say that I wouldn’t have been a fighter, and had my ever positive attitude, because those things are just me, who I am. BUT those words HAVE stuck with me, and I HAVE repeated them to myself a number of times over the years when things are going bad.
So I have MS – and I am going to do whatever I can to be OK with it and all the fun things that come with it. Like peeing my pants in public, falling down stairs, being asked if I have been drinking at 9 in the morning at my children’s elementary school. After discussing the different interferon options, I decided to go on the one with the LEAST frequent injections, because like any “normal” person I was NOT looking forward to having to poke myself with a needle (Shooting Up an Orange). I had horrible reactions to it, when they mentioned “flu like” symptoms they were absolutely spot on when it came to me. I choose to give myself the injection on Sunday nights, and I would spend the entire night, over the toilet I would have to change my pajamas 4 or 5 times because I was sweating so much they would be soaked. BUT I never said anything to my doctor, because I felt like, well they did say that I MIGHT have some flu like symptoms and yup, there they are. BUT after almost a year, and 7 BIG flair ups and steroids each time, my doctor suggested another mri which showed significant progression and so that was it…off innerfeurons and moving on to the next disease modifying drug.
About two months after I was diagnosed, my walking and balance had gotten so bad, that I finally broke down and bought a cane. – And then a few months later, when my doctor was suggesting that I get a geriatric scooter, I ended up getting a Segway (had to keep up my cool mom image) When I started on my second Disease modifying drug, even after only one injection, I felt better. NOT huge improvements but small ones. I found I was wall walking a little bit less frequently. On the second infusion, about half why through my arms started itching. I had a big bulky sweater on and figured it was just that, and so I continued to work on my laptop and scratch my arm. If finally got to be so annoying that I went to take the sweater off only to discover that my arms were covered in hives. I buzzed the nurse and they stopped the infusion, gave me Benadryl and hydrocortisone through the IV and once the hive had gone down, started the infusion again at a much slower rate.
The third time, they pre-medicated me, meaning they gave me the Benadryl and hydrocortisone 30 minutes BEFORE starting. About 5 minutes into the infusion, I went into anaphylactic shock. I don’t remember much from that experience. I know that at one point I was looking at my chart in my doctors office and it said, patient flat-lined – hhhmmm not a good thing.
It ends up I had developed anti-body positivity…couldn’t keep on that drug because my body would just continue to fight it So at that point there weren’t many other DMD options out there. My doctor did NOT want to go the chemo route given my age and the limits with that. I did end up doing one course of Rituximab but then for three years I was not on any disease modifying drug.
And yet, three years ago, this week (it’s my anniversary) I put my cane away, and have not needed it at all **it’s now been FIVE years, whoop whoop!!** People that got used to seeing me with the cane or on the Segway run into me now and immediately ask if I am on a new drug (well NOW I can say yes because of the Tecfidera but before my answer was No, I got a divorce. NOT trying to be flippant, or in any way down play the enormity of a marriage ending, but it is truly amazing what a reduction in stress can do for your life. I am WALKING proof of that.
ONCE the fda approved the oral medications I agreed to have another MRI to see just what has been going on inside of me over the past 3 years. My boyfriend and I sat and talked with my doctor about the new meds and what I would do once I got the results back. Having NOT had an MRI for over 3 years, even though I have been doing and feeling better and have had way fewer flair up (only 2 or 3 in last 3 years) I assumed that there would be some new stuff in there. BUT NOPE no PROGRESSION no new lesions, no active lesions Which is awesome but it made the decision to start on a new DMD a bit more difficult. I had to think about it for a while, as it would mean starting to take yet another pill every day (I am on Amprya, and gabapentin and methadone plus my vitamins and fish oil ) so I went through the process of getting approval through insurance and the package arrived and it sat on my kitchen counter for almost a month. I needed to think it through. I knew my doctor thought I should take it and I knew that my boyfriend wanted me to take it, but I needed to decided for myself and I did. I finally decided that IF I decided NOT to take it and my disease progresses (which reality is it WILL) then I will be pissed at myself and IF I decided to take it and it progressed then I will at least know that I did what I could to ward off the bad and yucky stuff.
Have been on it since May and I did not experience an of the flushing or the heart burn (other than the very first day) but I have been having problems with constipation. I called and spoke with the nurse at the access number and she said that no one else has had that as a symptom, although because my blog is all about my life with MS and I have been writing about my experiences with Tecfidera I have had a number of my readers say that they have had problems with constipation as well. To be honest, I don’t really care whether it is or isn’t because of the new medication, I am just happy that I am working with my doctor to make it better and I am happy that I now have another chance to fight this stupid disease.
Since writing this – and being dismissed as a Patient Advocate I have stopped taking the Tecfidera. I wrote posts about my experiences with it but the short story is that the constipation and it’s “undesirable” side effects (Shit Hit the Fan) were just too much for me to deal with.