MS Update - Being my own advocate

Quote for the month – “Run when you can, walk if you have to, crawl if you must; just never give up.”

~ Dean Karnazes

This week I had the pleasure of going to an MS talk hosted by a couple of MS drug companies.  I was excited about this one for a few reasons: it was in Ames (most are in Des Moines), it was a presentation by one of the best most respected MS specialists (neurologists) in Iowa, and it covered the use of MRIs with MS treatment.

So here is a little back story about a conversation I had with my neurologist here in Ames in February.  Most of the MS survivors I know get MRIs at least once a year if they are in the first 5 years of diagnosis so I inquired about why my doc didn’t refer me for an MRI as it had been a year since my last one.  My last MRI showed active disease growth which is one indicator of disease progression.  He said as long as I was wasn’t experiencing any severe new symptoms that I was probably responding well enough to the meds I was on but he said if I wanted one the next time I saw him to ask.

The other thing worth noting is the meds I take three times a week often make me feel crummy for a week each month, so so for a couple weeks each month and generally good for a week or so each month.  They give me headaches and make me achy that generally over the counter meds don’t seem to help.    I mentioned in past posts that it is tough to take a med to keep from having a relapse that does permanent damage when the side effects make  me feel kind of crummy.  At the presentation the neurologist mentioned that the drug I take has a lower dosage option.

After the meeting I touched based with my neurologist about doing an MRI before my next in August and it is all set up now.   Hopefully the scans will show no active lesions and we can talk through going to a lower dosage which has the potential to make me feel better more often.

Several of you donated to my ride last year so I wanted to let you know that I am riding again this year.  My goal is to ride 50 miles on June 27^th.  The link below is where a donation to support MS Research can be made on my behalf if you are interested and able to do so.

http://main.nationalmssociety.org/site/TR/Bike/MNMBikeEvents?px=13447566&pg=personal&fr_id=25324

This is just a small step to reaching my season goal of racing in my second half ironman triathlon (1.2 mile swim, 56 mile bike, 13 mile run) on September 13^th.