Name : Sasheena Kurfman
E-mail : ladylithia@gmail.com
Adult: Diagnosed when 44 years old
Location: West of Phoenix, AZ
Area(s) affected: Left hand: 3rd Metacarpal and 4 carpal bones: Lunate, Hamate, Capitate, and Triquetrum
Personal History:
When I was 13 years old, I remember walking in a shopping mall towards where my mother worked and suddenly doubling over in pain. A pain shot its way from my left hand to my left elbow. By the time I was doubled over, the pain was gone. It hit me three or four more times and over the following 30 years I had perhaps one or two of these episodes every year. I spoke with doctors and they deemed it "Tennis Elbow."
When I was 40, I started to have a lot of seasonal issues with both hands. Mostly it was an annoyance, and I thought it was the change of the weather. But when I was 42, the pain became extreme. I saw a rheumatologist, having self-diagnosed it as either Fibromyalgia (I was diagnosed with Fibromyalgia when I was 28 years old), or Rheumatoid Arthritis.
The Rheumatologist did blood tests and decided that it was far more likely to be Fibromyalgia since my fingers, while feeling swollen, were not red, nor swollen. I had no indicators of serious disease. He put me on 600 mg of Gabapentin 3 times a day. Summer set in, the meds did a great job, and my right hand, while still somewhat painful, was fairly well healed. I could make a fist of my hand with only minimal pain. But my left hand continued to hurt, particularly my pinkie finger.
When I saw my Rheumatologist again he was concerned by the fact that the pain was more acute on one side. I had also jammed my left middle finger against the wall shortly before that visit with my Rheumatologist. My chief complaints when I saw him was an inability to bend my left pinkie finger without serious pain, an extraordinarily painful middle finger, and the inability to bend any of my fingers into a fist. He ordered up comparative x-rays, and we continued the Gabapentin.
While we waited for the results of the x-rays, I continued to try to figure out why I had the pain I had searching the internet and learning the anatomy of the hand. I could tell that I had multiple fingers with "trigger finger" but it was mild and dissipated quickly as I warmed up each morning. I could not, however, figure out why my left finger was malfunctioning so deeply. The pain came when I flexed/bent the finger, but it wasn't the flexor tendon that hurt. It was either the small muscle on the pinkie side of the hand, or the abductor tendon that hurt. But I could use both without pain. I'm still not sure if this pain is related to the Melorheostosis that I was diagnosed with. I haven't read of anyone having a similar issue with the side of the finger hurting, and the fact that I can't find it leads me to believe that it is the Melo in my wrist causing difficulties in my hand. I also have all of the signs of Carpal Tunnel Syndrome in my left hand.
The radiologist was concerned by my x-rays and ordered a CT scan for my left hand. His diagnosis was either Melorheostosis, or Myositis Ossificans (bone/calcium deposits in soft tissues). He stated that Melorheostosis was considered highly unlikely.
The CT scan shows that two thirds of my third metacarpal bone had the typical flowing wax melorheostosis, and there was significant multifocal sclerotic lesions most typical of a "type of Melorheostosis."
The actual words of the CT Report from September 7, 2013, were:
Findings: There is presence of Multi-Focal Abnormal Sclerotic Lesions involving several of the carpal bones as well as the third metacarpal. There is very dense sclerosis of the Capitate along the Volar Cortex with a slightly exophytic component. Similar findings involving the Lunate with similar smaller lesions involving the Triquetrum and Hamate. There is dense, Solid, intramedullary, cortical, and periosteal sclerotic bone changes involving the third metacarpal shaft and base. Overall the findings are suggestive of a form of Melorheostosis.
A further CT scan of my left forearm and elbow; as well as my pelvic region (a zone of serious pain for me) showed no further sclerotic lesions. I haven't yet stopped by my doctor's office for a copy.
The images attached include the simple X-Ray of my left and right hand (for comparison)... One view of the right hand, three of the left.
In addition some of the snaps from the CT scan: Also a small AVI film of the entire finger-tip to wrist CT scan.
Click the above image to see the animation - (this will launch an external media player)