Beginning in May of 1998, my sixteen-year old daughter has had periodic episodes where her hands, esp. the left one, will turn into a "claw" like form and can be straightened only with resistance. The first episode of this occurred while on Acutane. She continued the acne treatment for four months, with the episodes occuring approximately once/two months. On the fourth month, she had 21 episodes (isolated) one day, and we saw a Family Practicianer who wanted her to discontinue her Acutane. Since then, she has infrequently had these episodes, but the length of time they affect her hands has increased. Last week, she was braiding a friends hair, and both hands began this weird contracting. After it lasted about 2 hours, I took her to the emergency room where they did electrolytes (normal)and she was examined there and found to have very "cold" hands. When the hands were warmed under running water, they no longer "curled", but upon returning home, the episodes occured again, even with warmed hands, but to a lesser degree. She has had a clean MRI and normal neurological exams in the past. These events only occur when she is very tired and are often (but not always) followed by a mild headache. Do you have any idea what this could be and what tests should be run? I have mitochondrial cytopathy but have nothing that resembles these symptoms, and both my neurologist in MS and Dr. Cohen think my mito problems are sporadic. My daughter is 5'10" and weighs about 130#..no other problems except acid reflux...takes prilosec. Thank you..JanB
Dr. Cohen is one of my favorite people. He trained me and I consider him my mentor. There are several forms of mitochondrial disease that can cause cramping, dystonic like posturing and pain. These are specific mutations in the subunits of the respiratory chain. It is episodic in nature and would fit with the description that you give. There are also other things that might do this, such as glycogen breakdown deficiencies. Maybe a forearm ischemic test to rule out the glycogen breakdown deficiencies and mutational analysis by Dr. Shoffner's group for the mitochondrial syndromes.
The episodes are being triggerd by the repetative use of ehr hands. It sounds like she may be predisposed to a RSI.
The test will in all probability be negative as the small milliner fibers controling this will not be tested and the larger one will not show until there is significant damage to the nerve.
There maybe compression on the nerve coming through the Thoracic Outlet, Behind the rib cage and collar bone area. The major nerve and vascular bundles pass here and feed through the arm to the hand.
Does she have any tingling to the pinkie and ring finger. Is it difficult for her to hold a phone or blow dry her hair? These are signs of a problem. Ask your daughter to hold her arms up as if she is being robbed...up high, time how long and what she feels until she can no longer hold them up.
My daughter developed TOS from a injury at work where she pulled a charlie horse type spasm in her neck. She was 16 also. Her hand claws and her elbow will lock at times.
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