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M.S. Sucks!!

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.