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I've had EMG testing, and the doctor found that I "mild, chronic reinnervation changes in my Gastrocmnemii bilaterally." What does this mean? A week later I was seen by my orthopedic surgeon for knee pain. She noticed that my left leg has lost a lot of muscle mass, and also recommended a cortisone shot where the Gastrocmenius inserts into the tendon, to address knee pain. Is there any connection between the finding of the neurologist and my knee pain? Or the decreased muscle tone in my leg? I find it hard to believe that this is all co-incidental. Also, the neurologist found an elevated ACE level(70). How could all this connect? Ehlers Danlos and Postural Orthostatic Tachycardia were already given as diagnoses, but they don't seem to answer these questions.
- Nan ( United States of America ) Jun 26,2016 9:56 PM

Answer

Jun 28,2016 7:36 AM

Dear Nan,

 

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 supply.

 

 

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:

 

  • Skin
  • Bone
  • Blood vessels
  • Internal organs

 

The abnormal collagen leads to the symptoms associated with EDS.

 

Neurological manifestations 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

 

http://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/

 

 

https://www.nlm.nih.gov/medlineplus/ency/article/001468.htm

 

 

https://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome

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