I had my multiple sclerosis second opinion appointment a few days ago. And I finally got the answers I’ve been wanting. The only problem is I’m still left with questions that do not have answers… yet. I will say, that part is a little different this time. Those questions are ones I have to personally answer. In fact, they are questions that only I can answer.
Let’s backtrack… starting at my second opinion appointment. I won’t leave you the edge of your seat; I’ll just say it bluntly: I do have MS. I do. We (well, me… along with my parents and husband) were seen right away at the doctor’s office. It was actually so quickly I didn’t have a chance to complete my ‘new patient’ paperwork. We squeezed in (again) a tiny, stuffy room while two nurses took my vitals. Less than five minutes later, my doctor walked in. Dr. Ham. Thank the world she doesn’t make her patients wait as long as Dr. Thurston.
Dr. Ham is young, blonde, and has the type of light blue — almost white — eyes that absorb all. At first, I was leery. She sat down in her ‘doctor chair,’ looked at each of us and, after formal greetings, bluntly asked why I was there. “For a second opinion,” I explained. “My doctor thinks I have MS. I don’t. So I want to know… Do I?” The question hung in the air. It was awkward. I knew I left the ending filled with hope… but I’ve also learned there’s no such thing as “let them down easy” when it comes to doctors. “Yes. You definitely have MS,” she answered, staring intently at me. “You have multiple lesions… so between that and your optic neuritis, there’s no doubt in my mind — or Dr. Thurston’s mind. Yes, you have MS.”
We sat there. My family glancing from one another. All of us perhaps thinking of how to respond. At least I was. She was just so blunt. Threw it out there. No one caught it. We had to pick up what she said, fumble with it before we were able to talk again.
I questioned her on what made her believe it was this disease and not something else. “Easy,” she said. Apparently optic neuritis is a very common symptom of MS so combined with the lesions (or areas of nerve damage), it can basically be nothing but MS. I threw out other diseases, illnesses and she briefly tackled each and explained why that is not an option. As James later said, it was almost better this way; her opinion didn’t “muddy the waters.”
James asked questions concerning treatment, and she instantly began pulling up information on her computer. She said she commonly prescribes Copaxone for people with multiple sclerosis. First, Dr. Ham explained, it’s one of few MS medications that have been around for a long period of time. Also, the fact that Copaxone is injected via needle daily allows one’s body to know what is coming… which is key. With medications given one a week (like Avonnex), your blood levels never remain consistent… which is bad. Once a day meds — with anything — are always better for your body. Plus, she added, this medicine can be taken during pregnancy. I found this interesting because when we met with Dr. Thurston, he was avidly against one taking MS medications — regardless what type — before, while or after pregnancy. “The medications are known to cause birth deformities,” was his answer when questioned why. Dr. Ham though said Copaxone is in Category B which means it has been tested on animals and in all of the births, there was no increased risk of deformities in the babies… compared to ‘normal’ births. Note: Yes, I said tested on animals. Copaxone has never been tested on pregnant women for the obvious reasons — No study would be approved if pregnant women became test subjects. Dr. Ham also said she’s had many woman who have MS and have given birth to perfectly health children. …Something still feels wrong though. Dr. Thurston avidly disagreed. So many other doctor’s avidly disagree. I bring up the pregnancy not because we’re gung-ho to start a family right now… but because that was one of the big differences in opinions.
Another huge difference — I mentioned it earlier: Dr. Ham saw multiple lesions. Dr. Thurston said I had one — a very teeny-tiny area in my brain. Hearing ‘multiple’ gave me hope — as strange as that sounds. What I mean is ‘multiple’ allows no room for second guessing. ‘Multiple’ allowed me to know this is the path I’m traveling down. ‘Multiple’ also made me believe I have MS. And know what? It makes sense that I would have multiple lesions. The term ‘multiple’ can refer to nerve damage that is past… or present. For instance, I had optic neuritis. That means I had at least one optic lesion. Well, that area got better; my body sent cells to repair the damage. Then, six months later, a new lesion shows on the MRI. This one in my brain. That one too will be repaired, if it hasn’t been already. But others will pop up. They too will come and go. The brutal process keeps repeating… only noticed when the damage occurs on a major nerve — one controlling sight, one controlling arms or legs… the bladder, the throat… or the spine. Anyway, the fact that I had some lesions that are present and others that have since disappeared comes as no surprise because, for me, it can be seen — I was blind in one eye… now I’m not. I know firsthand the lesions come and go.
Talking more about nerves themselves, Dr. Ham gave a great visual image — She picked up a telephone cord and said, “You know how inside this cord there are many wires, all wrapped around one another? Then, there’s this [and here she points to the outer plastic cord — the one you actually see when you look at a telephone cord] — This is the myelin sheath, a protective nerve coating which is in charge of sending impulses or messages along your nerves faster. So imagine your body’s immune system suddenly attacks your nerves — We don’t know why yet, but they do. And when they attack, they target an area on the myelin and eat away at it, destroying it.” Here, she quickly races her finger back and forth across the same area on the phone cord… showing how the myelin can be worn down. She continues, “At some point though, your body realizes the attack and sends cells to repair the damage. In the end, the damage disappears… but on a different part of that nerve or a different nerve altogether, another attack happens… and that attack again wears down the myelin sheath. That’s what MS is — A continual attack… but your body should be able to continually repair the damage.”
Should be able to. It’s words like that I find myself unhappily clinging to.
My body should be able to repair the damage.
Speaking of that damage, here’s a picture I found showing the myelin being destroyed (called demyelination):
In the end, Dr. Ham said the decisions from here on out are up to me. “You do have MS,” she said firmly. “Now, you need to figure out one, who will be your main doctor? I can work together with Dr. Thurston, if you’d like. Or you can have only him… or only me. Two, are you taking treatment? If so, what medication? And when will you start?”
Those were the big questions… with so far, no answer. I feel confused. I don’t know if I will ever be able to answer… and be convinced what I am saying is correct. Dr. Ham said there is no correct answer. “It’s all a personal choice.” Even so, there’s a right and wrong answer for me… at least I believe there is. But I’ve always struggled when things turn gray. I need them to be black and white. Clear and simple. No middle ground. James asked if my diagnosis was still considered “early on”… If I could wait, say four years, and then start treatment. “Oh no. Definitely not,” she answered — again bluntly. “The term ‘early on’ is used practically before diagnosis. ‘Early on’ is that first day you receive a diagnosis or the first day something happens. Technically, we’re past that phase now.”
Scary. Very scary. I feel like there’s a looming attack on the horizon. An attack of the immune system. I just don’t know how it will affect me… or when… and that’s precisely why everyone I know wants me to start treatment. Starting treatment as in beginning yesterday. But the fact is, they are not me. They love me and care about me, but they don’t know what I’m going through. Those I love — God bless them — don’t know how this feels… the fear… the unknown. I can compare it to a needed surgery that’s been put off… I can compare it to blood/sugar level chart that is no longer filled in. I can compare it to anything, but the fact is if it were as simple as a surgery… as simple as a chart to fill out… if it were that simple — I wouldn’t wait. But the thing is, it’s not. MS and treatment are not that simple.
This is why I don’t think I will start treatment right now. Yes, I will go on medication in the future… and stay on it for the rest of my life. As far as exactly when I will start the medication… I don’t know. I don’t have a date yet. This is a lot to take in, a lot to prepare, plan for. It’s a “lifestyle, lifetime change” is how Dr. Ham referred to it. “More than likely, you’ll be fine. More than likely, you won’t experience the worst of MS; that’s rare. But if you do, we’ll treat it as those symptoms emerge. More than likely, this will just be a harder way to live life. You’ll have challenges. A lot of them. More than likely though, you just have to look at life differently than the rest.”
More than likely.
More than likely.
More than likely.
Again, words I’m hanging on, regardless of if I want to or not.
Of course, no one knows what will happen. The term ‘more than likely’ is used for what’s happened to the majority of the population. I’ve never — ever — been in the majority. And because MS affects each person differently and because there is no cure, there is no proactive treatment or actions one can take. They can take medicine…. which has been proven to be somewhat helpful in the ‘more than likely’ group… but treatment as a cure? No. There is none. One has to wait… and if something bad happens, only then can another action be taken to try to prevent something further. You have to wait for the bad. I’ve learned that’s what those with multiple sclerosis have to do. Wait for the bad. So here I am. I’m trying, trying so so very hard not to think of what will happen if there’s no “more than likely.” If I’m not the majority…
It’s mind-boggling when you think about what one learns. Before this, I barely knew what MS stood for. Now, my heart goes out to every person whose been diagnosed and to those who know of someone battling this disease. If you’re reading this now, realize you’re the one getting me through. Your fight is allowing me to fight. Your honesty and openness tells me it’s okay. There’s a chance. And any chance is worth fighting for. Thank you.