Wednesday 18 February 2015

A little neurology goes a long way

I saw a neurologist last week about my tongue thing.  He was fantastic and I am very happy to have him as the newest member of my healthcare team.
The good news is that I do not have MS, ALS, or epilepsy.
Due to some very old scar tissue in my brain my neurologist suspects that my tongue issue may actually be congenital and for some unknown reason has decided to start showing symptoms now. It is possible that for another unknown reason the radiation I had to my skull is what kicked started the symptoms.
My neurologist would not be surprised if the symptoms disappear as suddenly as they appeared. I am going to hope for that.
At this point it doesn't feel like the symptoms are appearing any more frequently which is good. If the symptoms do get worse and start impeding my speech more my neurologist has offered to send me to a speech pathologist if I deem it necessary.

Early on Saturday....... Yes, Saturday.......morning I had to go to Victoria General for my first infusion of Pamidronate. This is the new bone drug I am switching to, replacing Clodronate. I was getting really tired of the timing of Clodronate since I had to take it first thing in the morning then wait an hour to eat.
Turns out one of the great things about Pamidronate is that in the future I will have to go in to get my IV inserted and the drug attached but then I can go home. The drug is infused using a portable infusion pump bottle and not a regular infusion pump.
This is what the bottle basically looks like:


The balloon inside is filled with saline and the drug is added. Then the balloon slowly collapses and the drug solution is infused. Pretty cool.
I have to remove my IV after the drug finishes running, but that is fine if it saves me from 4 hours of hanging about in a hospital.

After I got home from that adventure I felt okay. For Valentine's Day dinner it was cheese fondue and pain au chocolat bread pudding. Very tasty.

By the time I went to bed I was definitely feeling off. Heart burn, achiness, and general grossness. I still had some of the peppermint spirits I used during chemo for upset tummy and it worked its usual miracle.
Sunday morning I woke up and I believe I felt sort like a person would about a week after being hit by a bus. Every part of my body ached except for my left elbow and I was so tired. I'm not quite sure why my elbow got to escape the joy.

After some Tylenol and several hours of not moving on the couch the ache started to fade. By Sunday evening it was pretty much gone. Monday morning I felt normal again.
Now I know, the day after Pamidronate will be a write off. Over time I am hoping the side effects will decrease.

Ok, back to waiting for surgery dates.......

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