Caitlyn’s Polymyositis Blog

Yesterday I got a call from the Neurologists office asking me to come in for some tests and stuff.  This morning, my parents and I headed into the hospital.  No wheelchair!  It was quite a hike from where we parked to where I had to be (the EMG clinic).  However, I made it without falling or passing out.   I ended up getting into my appointment about forty minutes too late.  When my doctor came to get me in the waiting room, I got up and walked out to the hall.  He looked at me and said “Well, I’m liking what I see already…I saw how you got up from that chair. Wow!”  Last time he had seen me, I definitely wasn’t getting out of a chair by myself…I wasn’t even able to get out of my wheelchair by myself. 

The doctor started off by asking me questions about what I’m still having trouble with.  Right now, I’m doing quite well.  Stairs are still a bit of a challenge- I can do them, but there needs to be a railing and I’m definitely not running up the stairs.  He asked where I thought I was as far as my normal self, and he was quite pleased to hear I was at about 75%.  He then asked about the side effects I am experiencing from the medications- acne, weight gain, hunger, racing mind.  All of which are still there, but definitely have improved since my steroid dosage has been lowered. 

The neurologist did some strength testing and remarked that I’d make extreme improvement since he’d seen me in January.  He tested my reflexes, my ability to push against his hand with my head, with my feet, my arms, and how well I could keep my arms up while he pushed down.  He also checked my reflexes and eye movements, and scratched my skin with a safety pin to see if it felt the same on both sides.

Once we were through with the testing, he started telling me what was going on and why I was called in for more tests.  He asked me what my rheumatologist had told me last week.  So I repeated that the pathologists in Halifax had discovered markers on my muscle tissue indicating beta-oxidation. That they had suggested that I have a lipid storage disease or a metabolic myopathy- something even more rare than Polymyositis.  However, they still weren’t ruling out Polymyositis since I was responding well to treatment.  My neurologist let me know that they are hoping to hear from a couple neurologists in other cities.  Unfortunately, one is on vacation and one is off sick right now, so he hadn’t spoken to them yet.  The other neurologists specialize more in nerve and muscle diseases and would have more insight into the genetic disease aspect.  Apparently I will have to go to another city: Halifax, Quebec, Toronto, or maybe Rochester, Minnesota…those were the ones he mentioned.  I’m hoping for Halifax as it would financially be the easiest as the others would require flights or extremely long drives.  The neurologist mentioned that I may have to go to a genetics clinic to learn more about what’s going on.  However, he also said that this is the type of case that makes people want to come to work in the morning for.  I’m interesting.  This is why things seem to be moving along fairly quickly…whereas most of his other patients, wait three years to see him and I saw him within 2 days…

Anyway, I still need to wait for that call, but in the meantime, I have an appointment on April 28th for an echocardiogram to make sure that my heart is still fine.  I headed off with all my paperwork to the blood clinic.  I caused quite a backup at the blood clinic- the requisition was so different from things they usually see there that it took several phone calls to make sure it was being done correctly.  Carnitine tests had to be put in special tubes…special colored stoppers.  Some tests were put in Sodium Heparin tubes, while some were put in Lithium Heparin tubes.  And then I got to pee in a bottle.  Gotta love peeing in a bottle.  Ick.  My urine is on its way to the IWK Health Centre in Halifax, and the blood is on its way to the Mayo Clinic in Rochester, Minnesota.  I’ve always wanted to visit the Mayo Clinic…now my blood gets to go, I’m a little jealous. 

Hopefully, there will be some sort of Dr. House who will figure out exactly what’s wrong with me…