We interrupt our regularly scheduled program (sharepost) to bring you this important message…
Yes, I said it. Sometimes it truly sucks to have Multiple Sclerosis. People who read my simple writings probably infer that I’m a strong, invincible, educational source of information and support. That is partially true.
I love providing information and support. I enjoy being seen as a strong role-model of sorts. I even enjoy being a leader in the MS Blogging Community. But I am certainly NOT invincible.
As I sit here writing this post (on Monday morning), I am waiting for a call from my neurological nurse practitioner. I had an appointment with her on Friday - a routine appointment which occurred 4 months from the previous one in February.
I once graduated to routine appointments every 6 months, but have been downgraded to every 4 months due to disease activity. I’d like to say to my MS - "please give me a break, would ya?"
The call I’m waiting on is to tell me whether I need to come into the Infusion Center to get hooked up with IV Solumedrol or not. My symptoms have been increasing now for a few weeks and I have been experiencing new symptoms as well this spring.
"But Lisa, you told me that if I am experiencing new or increased symptoms for more than a couple of days that I should call my neurologist.
Is this not true?
and Why didn’t you call your doctor before now?"
Very good question. Thank you for asking. (hypothetically)
You may recall that I had developed a urinary tract infection (UTI) near the end of February which triggered a pseudoexacerbation. It took two rounds of antibiotics to knock the infection out of there and for me to begin to rebuild strength and endurance. The first sign of that UTI was that I simply wasn’t feeling so good…very much fatigued and having urinary urgency.
Near the end of May I began feeling a bit lousy again. I started walking funny, uncoordinated, and definitely not fluid by any means. I had also begun feeling just not well, fatigued, and over-emotional. On June 1st, I called into my primary care doctor’s office and asked to come in to get tested for another UTI.
In describing my symptoms to my primary doctor, I said, “it’s either another urinary tract infection or a multiple sclerosis relapse.” She responded, “well, I vote for the infection.” So did I. I immediately started with two rounds of Cipro and waited to feel better, which only happened to a moderate degree and hasn’t lasted.
The following day I had my annual eye appointment during which I expressed great concern for the declining visual acuity I’ve been experiencing in recent months, however my color vision remains unchanged. Even mentioned that when I’m teaching, and looking from music down to student’s hands or to their notebook in which I write, my eyes will rebel and look anywhere but where I want them to focus. It is disorienting and somewhat dizzying.
We couldn’t quite get my right eye corrected to 20/20, but did decide to adjust my prescription power. If you know anything about severe myopia, you will appreciate that my prescription power is in the range of -13.25 diopters. That’s some naturally poor eyesight. LOL. I have both new contacts and eyeglasses on order.
Back to my neurology appointment last Friday.
I prepared to discuss the repeat UTIs after not having one since college, asking if consulting a urologist was in order. I prepared to discuss the increased cognitive problems I’ve been experiencing which have continued to increase in recent months. My short-term memory is noticeably affected as is my ability to stay on top of things. I also mentioned the eyes which don’t always cooperate under certain circumstances.
For the eyes, she brought out a large drum marked with alternating black and white columns. She spun the drum in one direction while I gazed at it, then she changed the direction. This started my eyes bouncing!! Hmmm, a little nystagmus. The bouncing continued for at least 20 more minutes. Oh boy, how exciting (sarcasm here).
Our plan is this. Urine analysis and culture to look for infection. If the results are positive, then we will try a different antibiotic. If the results come back negative, then she’ll be calling me into the infusion clinic for Solumedrol and it will be called an official relapse.
That is where I am right now…waiting on that phone call.
If this is a relapse, then she will likely want me to undergo an MRI sometime after the steroids have worn off to look for new lesions. Nystagmus is associated with lesions in the cerebellum, brain stem or 8th Cranial nerve. We will also move forward with consulting the urologist and get a neuropsych evaluation of my current cognitive abilities.
I really don’t want to be having a relapse right now, but admittedly some of my symptoms have been slowly getting worse in the past six weeks, including symptoms which are new to me.
Tomorrow I will be picking up my new glasses and contacts, as well as undergoing a Visual Fields test while I’m there. After I catch up with myself, I need to reschedule the rheumatology appointment which I had canceled too during this time.
It’s busy being me!!
UPDATE: Shortly after writing this post, I received a phone call from my Infusion Nurse. As soon as I heard her name I said, “so I guess I’ve got my answer.” She replied, “yes, your urine is fine. The doctor ordered five days of steroids for you.”
So I finished my lunch, cleaned up a bit (which means I actually took a shower and washed my hair), and made it to the Infusion Center at my neurologist’s office by 1:30pm. Got hooked up with an IV line in my left forearm (the best place for me) and we got the drip flowing.
I usually take my Solumedrol drip in 90 minutes instead of 60 minutes to avoid a headache afterwards. It’s very important to avoid anything salty or processed, increase water intake, increase potassium-rich food intact (and I take a potassium supplement just to be extra efficient), try to rest as much as possible, and take advantage of sleeping pills at night.
Today is now Tuesday and I’ve completed day 2 of this week of steroids. Only three more left before I’m down for the count all of next week. That is my normal routine and knowing my personal patterns help to make each experience easier along this journey.
There have been no changes in my symptoms yet but we’ve got time.
UPDATE 2: It’s Thursday afternoon and I returned from the Infusion Center a few hours ago. Last night the crankies and irritability began. My Sweetie wanted to talk to me and try to make me feel better…I just tried to politely not bite his head off. LOL.
I’ve begun to see some improvement. My legs are agreeing to move the way I wish them to and my balance is improving. The numbness is starting to recede in my legs, however that is leaving me with crazy annoying tingles swirling around from thighs to feet.
The wall of wavy glass which I have been looking through for a few weeks (which I had not previously mentioned) is starting to smooth out. My right eye is still blurry and a bit darker which is left over from previous occurrences of optic neuritis in that eye.
Tomorrow after the final infusion, I will be examined by my nurse practitioner. I believe that she will be pleased with the improvements below the waist. My eye is far from recovered but there have been minor improvements I can see (pun intended).
She will prescribe a Decadron taper since I cannot handle Prednisone. Then we will probably discuss further the use of pulse steroids (infusion of Solumedrol on one day each month). If we go that route, then I must have my bone density measured first. And I think that a complete workup with a neuropsychologist is likely in my future.
Right now, it’s time for a nap before I begin teaching some horn lessons. This is the final week of school in my area and the last week of regularly-scheduled music lessons. The week after next begins the summer schedule which is always lighter than during the school year.
Finally, it’s summer!!!
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.