Listening to my own advice. It is highly ironic that several recent posts have been discussing relapses and communicating with your doctor. I experienced both on a personal level yesterday afternoon.
Living in Denial
In the past week or more, I have been feeling not my best. Each day symptoms would begin to flare and I would hope to wake up the next morning feeling better. One such evening, it was my eyes which were out of whack. The color pink was beginning to fade, but the next morning things were back to normal. There was no pain to report but one eye did appear darker than the other. (Denial.)
More annoyingly, spasticity has been increasing behind my left leg. The muscles have felt knotted and trying to stretch them out has been painful. Baclofen had returned to a twice a day medication with modest benefit. For me, when spasticity increases, my knees begin to hurt from the increased pull on them. Living with joint pain anyways, that is one which takes me a while to associate in a timely fashion. (Denial.)
I started having more difficulty getting up from a seated position and walking up the stairs. I didn’t come up with a good excuse for that but just thought my symptoms were "acting up." But Thursday’s yoga class was very difficult for me. My legs tried to convince me that I weighed two tons, but I told them back that there were sorely mistaken. Some of the stretches focusing on the legs almost made me want to tear up. (Less denial.)
After yoga class, my instructor commented that I had some difficulties. "Yes, I know, my MS seems to be acting up lately." She let me know that the yoga would help with the MS. She teaches other people living with MS. But I did mention that I was "in denial" as I knew that I probably needed steroids but with a concert this weekend, I was hesitant. As I left yoga class, my walking was definitely not smooth or steady. (The Denial wall starts cracking.)
Thursday night I made a plan to call the doctor’s office and get an appointment Monday morning and plan to stay for an infusion of Solumedrol. With Thanksgiving next Thursday, that would mean I could get in three days of IVSM. My initial plan was to avoid steroids over the weekend so that they wouldn’t interfere with my sleep, cause anxiety or headaches, tarnish my ever joyful mood (haha), or make my heart pound out of my chest. (Denial mostly gone.)
By the way, my fatigue had returned in full force during the past week and a half (or so).
Calling the Doctor
Friday morning, I was definitely not walking as well. I woke up, responded to some emails, and played a few computer games. Then I called the neurology center where my health care team consists of the nurse practitioner (#1 in my book), my neurologist, the MS nurse on staff (whose direct number I had lost), and the infusion nurse extraordinaire (always gets a good stick quickly). Having lost the MS nurseâ�™s number, I called the main patient line covering the entire neurology clinic staffed with 12 neurologists, one of which is an MS specialist.
A message was taken to be given to my nurse practitioner. I received a call back in less than an hour with the offer of an appointment directly after lunch at 1pm. I was a few minutes late to the appointment due to a very unusual traffic snafu in the area. My travel took twice as long as normal (oops).
The exam revealed definite weakness in both legs (could hardly lift them and definitely couldn’t push against resistance), weakness in the right ankle (usually a rock solid, but I had been experiencing some minor clonus in this foot/leg during random yoga poses), weakness in the left arm (which had not shown to be weak in a number of years), numbness in all four limbs (a symptom which is always present to some extent), a positive L’Hermittes sign, and a report of peed on pajamas that very morning.
When my nurse asked me to walk across the room, there was a big "I see" sigh. She told me to go ahead an sit down. I asked, "What? No walking on the toes or heels?" She responded with "No, nothing fancy today." We skipped the other walking and balance tests. I did my own Romberg test and home and could tell you that I would fail miserably. LOL.
The Steroid Strategy
I knew that steroids would be recommended. Actually, I was planning to ask for steroids, but as mentioned above it was all about the timing. My nurse could send me down the hall to the infusion suite for a boost on Friday, to follow with oral steroids over the weekend, and continue with IVSM (intravenous solumedrol infusion) next week for three more days. The alternative was start with oral steroids on Friday and follow-up with IVSM next week.
I hemmed and hawed about the decision, even asking which would have a better outcome with my weekend plans. Oral steroids would work to halt the relapse in its steps but it would not really improve things. To begin the process of improving things, IV steroids was needed. I knew that deep down.
By 1:30pm, I was walking into the infusion suite to get set up. On this Friday afternoon, the infusion nurse already had her coat on and was about to leave as no more patients were scheduled. There was a brief hesitation and if I were there for just one dose, then she wanted me to come back on Monday. But I was here for four doses total and the official description giving by my nurse practitioner was that my legs were a bit "puny" and I was definitely in a relapse.
My IV was in place within five minutes and the solumedrol was getting mixed up and ready to drip. The infusion nurse had to go find my file (she keeps her own separate file for infusion patients) and create some addendums to the day’s records, as she had already completed all her paperwork. She also remembered that I have to go slow with the IV drip in order to avoid the dreaded steroid headache. We were done at about 3pm and I was off to the pharmacy to fill the prescription for Decadron (steroids) to take over the weekend.
When I got home, I took some Zantac (to protect my stomach), took some potassium (to calm my heart-poundiness), and drank lots of water to begin flushing the steroids out of my system. I tried to limit the amount of peanut M&Ms I ate and filled up my stomach with lots of carrots throughout the evening. Last night I took two Restoril at around 10:30pm to try to get some sleep. An hour later, I was still wide awake so I took one more pill. Finally, I think my eye lids were getting heavy around midnight. I managed to sleep until 6:30am (success). Today, I€™ve already had two Decadron and will take more tonight. I’ll repeat this whole process until Monday morning when I go back for my IVSM.
Acceptance and Action
It’s funny. When talking with my nurse practitioner, I mentioned that I had lived in denial of this developing relapse for almost week. If someone had presented all the same information to me and asked for advice, I would have told them to call their doctor. I needed to follow my own advice.
It’s been since the summer of 2009 that I had a full-blown, undeniable relapse. Since starting Rituxan, my possible relapses have been small and not worth steroids (although we did experiment with six month of pulse steroids last year and they did improve my symptoms at the time). I suppose it was "time" for a relapse as I had been doing well for so long. No treatment has 100 percent relapse reduction rate.
Already I feel better about my choice to call the doctor’s office and start treatment immediately. I can deal with the negative side-effects and manage to do well this weekend. Maybe even my walking will be somewhat improved. At least it shouldn’t be worse but I will still need to be extra cautious around all of the expensive musical instruments this weekend. I definitely don’t want to be responsible for something getting damaged due to my unsteady balance. Fingers crossed.
Now it is almost 10:30am on Saturday morning and I need to go shower and warm-up my embouchure. I’ve got rehearsal across town (35 to 45 minutes away) at 1pm. I want to arrive extra early so that I can visit the bathroom and get seated before the majority of the players seated around me arrive. It should all work out fine.
Taking action now (although I was hesitant) feels good. I recommend that you do that same if you are ever in a similar situation. Don’t stay in denial for too long so that you can halt your relapse in its steps, especially if you’ve got lots going on. Hope everybody has a great weekend and Thanksgiving holiday.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.