As awful as it is, there is probably no better time in history, if you have to have it, to have MS.
In the past, it could take years to determine an MS diagnosis. Because heat exacerbates MS symptoms, at one time patients would actually be placed in a tub of hot water. If they got worse, the diagnosis was made. The symptoms, in the beginning, can be so vague and mimic other things, that MS is usually not the first thing considered. Fatigue? Well, you have four kids or a stressful job or fill-in-the-blank. Dizziness? It’s probably an inner ear infection. Numbness in your feet? Probably a pinched nerve. The list can go on and on.
It is when those symptoms become a repetitive constellation that other things are looked at, other tests are ordered. The most common tests are spinal taps, evoked potentials and, now, Magnetic Resonance Imaging (MRI). Spinal taps show a predominance of a certain substance in the spinal fluid that is associated with an MS diagnosis. Then one’s medical history is looked at for patterns of attacks.
But now the real clincher is usually an MRI, which wasn’t even available until the past decade or so for many people. An MRI will pick up the damage to the spinal cord and brain as glowing white spots, the tell tale signs of multiple sclerosis. Sclerosis means scar. And with MS you have multiple scarred areas of damaged nerves.
Getting the news of an MS diagnosis is experienced in a variety of ways. Some physicians are blunt and blurt it right out. Some beat around the bush, as in my case, saying ‘maybe’, ‘possibly’ and ‘could be’ a lot, for months, even though they knew full well that was exactly what was wrong with me. When I was in the hospital with my second relapse I said to my doctor “So does this mean I have MS?” She gave me the ever so helpful reply “Looks like it.” And walked away, leaving me sitting alone in the hospital bed. So I never got the “I’m afraid you have MS” talk. No comforting words, no pat on the shoulder, no sympathetic “I’m sorry”’s. Nothing, actually. I was too much in denial to be shocked or stunned or even particularly upset. Except that I was the one in the hospital, it felt like it was happening to somebody else.
In a way I was lucky to have a diagnosis after a relatively short time. Some people go for years without knowing for sure and are often treated as hypochondriacs by their healthcare providers. It can almost be a relief to them to have a defined condition to deal with.
Once the diagnosis has been made, as with everything else with this disease, there are about a million different paths you can go down.
Some immediately embrace the entire concept and become MS. Some pragmatically decide they will simply cope as best they can. Some of us really fall apart (who could blame us?). And some (this would be me) decide they are going to put their fingers in their ears and with total maturity mentally go “la la la la la…I can’t HEAR you!!!”. It took me years before I could even say “MS” out loud, never mind acknowledge to myself I had it.
The next step is deciding a treatment regimen. Fifteen years ago, there was no such thing. IV steroids could help limit a relapse, but there was no real treatment. That changed with the introduction of interferons, which, while not a cure, were found to limit the frequency of exacerbations or relapses (these are periods where your MS symptoms ramp up full throttle to the point you can’t function). There are now several drugs that can be chosen, depending on your lifestyle, your history and your risk tolerance.
All the medications are injectables. There is no oral treatment at this time for MS. The interferons can cause miserable side effects, such as feeling as if you have the flu all the time. Another drug, Copaxone, can cause painful reactions at the site of the injection. I was on Copaxone for a while and hated it for that reason. It is a daily injection that I would give myself, but the reaction I had after each shot was so horrible I would be in tears. Plus, it didn’t work, I kept relapsing. So I moved onto the final stop on the MS med line, Tysabri.
Tysabri is the newest MS drug, about four years old. It was taken off the market for a time because several patients who were on it died from an incurable brain infection. The virus that causes this infection, PML, is present in all of us and is dormant unless your immune system is compromised. And that is one of the things Tysabri does, it lowers your immune system, making you more susceptible to all kinds of infections.
After revamping the protocol, Tysabri was reintroduced in 2007, which is when I started on it. It is administered every 28 days through an intravenous line at an infusion center. I spend the afternoon there, premedicated with IV Benadryl to prevent allergic reactions. The Benadryl knocks me right out. So I have my little routine: I knit, I pray I won’t develop PML and die, I fall asleep for about two hours, I wake up and knit a little more, I go home. So far I have only had two really serious relapses in the past two years, whereas before I was relapsing constantly. So, weighing my risk for a deadly virus, I just keep my fingers crossed. I asked my neurologist how long I would stay on the Tysabri and he stated flat out “Until something better comes along.” That could be a very long time. But hopefully not.
So all around, with better diagnostic tools and treatments, 2009 is not a bad time to have this crappy disease. Research is being done all the time to try to find a cure. That is what MS fundraising is all about. There is exciting work being done with oral medicines and with ethically obtained stem cells.
It is my dream to be able to tell my grandson some day, “I used to have this illness called MS. But I don’t anymore.”