What's up, Doc?

WEDNESDAY – We went to Madison to see my neurologist. We had arrived early. We had checked in early. We grabbed a quick bite to eat. We left Sydney and Silas in the food court with Grandpa Lowell and Great-Aunt Betty and we went to Neurology for my appointment. We were escorted into an exam room almost immediately. Then, we sat... and sat... and sat. At one point, the doctor poked his head in the room and declared that he thanked us for our patience and indicated that he would be with us in TEN MINUTES.

During the appointment, we were away from our children for A LONG LONG TIME!

Once the doctor finally did meet up with us, we talked about my recent flare-up, breastfeeding, former MRI results, treatment options AND he performed routine neurological exams on me.

He indicated that THE HEAT is NOT what caused the flare-up. He indicated that they used to elevate MS patients body temperatures in hot tubs until they lost vision in one eye, only to have the vision return once the body temperature returned to normal. He confirmed that THE HEAT only causes temporary damage and was NOT to blame for the flare. (He wondered if we'd had a virus in our household. The only STRANGE thing I could come up with was the series of bug bites and allergic reaction I had been having... on and off, since June. He indicated that it MIGHT have contributed to it, but there isn't a real way to know WHY it flared up.)

He respected my wish to breastfeed. Surprisingly, he did NOT indicate that I need to quit right now, as I had expected. He assures us of the benefits for mother and child TO BREASTFEED and indicates that when we are ready to quit it, he suggests I go back on medicine at that time. (I told him that I do not want to quit until after August 1, 2012; 15 months for Silas = the same as Sydney.)

My MRI results from August 2010 DID show MS activity at that time, as well as plenty of old (activity) scarring on my brain and spinal cord. He confirmed that we do NOT need to repeat MRIs unless there is a NEED to do so; i.e. if we were to switch from one medicine to another, using it as a baseline. He showed us a chart of repeat MRI results that varied from month-to-month over the course of a year, sometimes hitting at a good time and others at a bad time and assured us that repeating an ultrasound wouldn't mean much of anything if it was hitting at a particularly good time.

Treatment options were discussed. Because I had been on one of the meds and NOT tolerated it well, it rules out three meds in one swipe, as they are all closely related. We decided it IS best to go back on the daily shot that I had been on in the past; afterall, no one has ever died because of that medicine. In the works, pending FDA approval, there is a highly effective (80%) PILL that has been well-tolerated with little-to-no-side-effects in psoriasis patients vs. the 40% effectiveness of the Copaxone shot that I would go back on until the NEW ONE is approved in the treatment of MS.

As for the neurological exams, he said I did reasonably well. I had to walk the length of the room and pivot, walk heel-to-toe (like a sobriety test), stand with my eyes closed, pretend to hold an invisible tray,  track a moving object, touch my nose - away - and back to nose. He tested my strength in my legs and hands. He poked me with a pin or other sharp object  - asking about my sensations. (I have since learned in reading on the internet that he was likely just checking for different reflexes by poking in various spots and watching for the reaction.)

When tracking moving objects, my right eye IS displaying minimal Nystagmus when the movement is laterally off to the far side. (He did not seem concerned.)

As he was gathering his things to leave, I questioned "Aren't you going to check my eyes?"

Stumped, he wondered "Do I NEED to check your eyes?"

"I'd prefer NOT to ever lose my vision." I replied.

"Well, hop on the table. Have a seat, we'll take a quick peek..." AND SO, per my request, he DID check it out.

Turns out, there IS some slight scarring on the optic nerve of my right eye. (That had NOT been there during my last checkup in August 2010.) He didn't seem alarmed at all, but I, personally, DO find it rather upsetting. At that moment, I had wished that he had NOT checked my eyes afterall. (Mike assures me that the scarring on the optic nerve COULD be two years old; there's no telling WHEN it got there and there is NOTHING that can be done about it... therefore, I shouldn't worry about it at all. Of course, that is easy for him to say that, but he DOES have a valid point.)

During the neurological exam, the doctor never really says much. (I think it is because he doesn't want you to know WHAT he is - or isn't - looking for.) He did mention that my reflexes in my legs especially are OVER-ACTIVE, which is common to MS.

He said that he wanted to see me again in 4 months. Immediately, my brain started thinking the worst... WHY does he need to see me again so soon? I thought this was a GOOD appointment. Mike reminds me that they are HOPING that I will have started back on the Copaxone by then. (I guess I just got spoiled when he'd always been so happy with my outcome that he declared not to come back for an entire year; I can hope for that again in the future.)

As for my first cousin who was just diagnosed with MS... the doctor is not concerned. We're of Northern European decent - live in the northern hemisphere - are both female AND are in the preferred age range for being diagnosed with MS. He indicated that my case has remained very minor over the years and that the course of my illness has treated me well. He hinted that my flare-ups have been minor. "Waking up with complete paralysis on half of your body would be a flare-up. What you had IS minimal. Consider yourself lucky." (I guess when you look at it that way...... I really AM lucky!)

He told us about a MS patient who used to worry herself sick about what the MS was going to do. Eventually, he reports, she died from heart problems instead of the MS that she feared so much. (I think that was my subtle hint NOT TO WORRY about things so much!)

Again, I'm left feeling hopeful... that this disease will LEAVE MY VISION ALONE! I'm NOT overly thrilled about having to inject myself with a shot every day, BUT there are worse things out there... I'll just continue to play the hand that I was dealt. One of these days, I will set a QUIT DATE for breastfeeding and get the ball rolling on ordering my shots. (I guess it IS the right thing to do.)

I am thankful that I have been SO FORTUNATE through the years. Fingers crossed for many more good years to come...

• • •

Recently, I let the National MS Society know that I had moved, divorced, remarried, moved, etc... and am now back on their mailing list. A packet just arrived in the mail. Turns out, there is NOW a support group in Dubuque that meets once per month at the same hospital that provided us with the breastfeeding support group. AWESOME! (Turns out, Mike's schedule WILL work out for me to attend - this month. It might be nice to be surrounded by others that are in the same shoes as me.)