Musings of a Medical Zebra

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Posts Tagged ‘Ehlers-Danlos syndrome patient’

PET Scan

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November 3rd, 2014 Posted 11:54 pm

It occurred to me as I was leaving the pain clinic today that I haven’t posted for a really long time. Rather than catching up on everything that’s happened in the past couple years, I thought I’d talk about my appointment today and leave the rest for another post.

I had a follow-up appointment with my pain management doctor this morning. My rib dislocations became more frequent last year. I now have a couple ribs that are chronically dislocated – – one is stuck under my right shoulder blade and the other two, both are on the right side, are located in the middle of my rib cage. As you can guess, this has lead to a fair amount of pain – – so much so that I rarely feel well enough to leave the house anymore. Though I am taking a pretty good dose of pain medication, my pain level averages a 7/10 daily. Unfortunately there aren’t many medication options available, as I have already tried most of them – – this is something I find scary.

Today my doctor decided to order a PET scan, which I am scheduled for next week, to get a better look at my ribs. We’re hoping it will provide us with new information – – what I am not sure – – so that my pain can be dealt with more effectively.

On that note, I think I’ll end this post & get some sleep. Goodnight.

Iron Infusions

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July 19th, 2012 Posted 5:10 pm

I found this post in my drafts. It was written on 9/15/2011, but apparently I never got around to posting it. So, here it is…

Over the past couple of months I’ve received seven iron infusions. My ferritin and iron levels were very low. I do not tolerate oral iron, so IV iron was my only option. Luckily I am not scared of needles and I’m an easy stick because I had to get a new IV each week. The first two forms of iron caused adverse reactions. The reaction I had to the second form was delayed by several hours. It caused my hematologist enough concern that he requested  I see him the next day.

I wasn’t a stranger to the problem causing iron.  I was infused with it three times — one infusion per week for three weeks. Everything seemed fine until  four hours after receiving the third infusion. At this point, I began to itch.

At first, I didn’t think much of it. When the itching woke me up — this was roughly 9 hours after receiving the infusion — I decided to look in the mirror. My chest and back were mostly covered with a rash. It hadn’t dawned on me what was occurring, so I went back to bed. I managed to fall asleep . I woke up again, due to itching, around 7am. I got out of bed for the second time to look in the mirror. This time, my eyelids were quite swollen, as were my arms and legs. I loaded up on benedryl, and called my hematologist a couple hours later. He requested that I see him. By the time I arrived at his office — the next morning — the rash and swelling were gone.