Based on the information
provided, the findings from the neurologist and orthopedic surgeon are connected.
Gastrocnemius muscle (calf muscle) is very important for jumping, running and
walking. The EMG studies of reinnervation (formation of new nerves) are a sign
that the muscle is damaged and is trying to heal itself by forming new nerve
The knee pain, ankle pain,
decreased muscle tone & mass, and neurologist finding of chronic re-innervation;
and increased ACE level are all related.
Given the family history of Ehlers
Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS) the
possibility of connective tissue damage (tendon, muscle, and joints) explains
all the above findings
A variety of gene changes
(mutations) cause problems with collagen. This is the material that provides
strength and structure to:
The abnormal collagen leads
to the symptoms associated with EDS.
of EDSs, such as musculoskeletal pain, fatigue, headache, muscle weakness and
paresthesias (sensation of tingling or pricking “pins and
needles”) is possible.
There are 6 major types and
at least 5 minor types of Ehlers-Danlos syndrome. http://ehlers-danlos.com/eds-types/
It is very important to do genetic
testing to determine the type of EDS. A clinical geneticists will be able to
help you with this testing.
I strongly recommend getting
the genetic testing done to determine the EDS type and to consult with
neurologist for further evaluation since you have neurological manifestation of EDS.
Learn more about EDS at