Neuromyotonia Diagnosis: 1976-95

[stevenpaulo]

Garth - just a brief rundown on my case history that lead up to the miss-diagnosis followed by the correct diagnosis of Neuromyotonia (NMT/PNH)

Open surgery at L4/L5 level in 1976 to relieve classic sciatica symptoms - completely successful.

In 95 following severe and persistent cramp in my thigh. all this weird stuff started affecting my legs.

Initial evaluation by an orthopaedic surgeon including MRI films. His opinion was that spine/disc structural damage was not the cause and referred me to a neuro. The neuro performed blood, EMG and muscle biopsy which where all normal and could offer no diagnosis. Suggested attending a more specialised neuro- science clinic. While waiting to attend this clinic I was again evaluated by another orthopaedic surgeon who was adamant that my back was the cause. Although not convinced I agreed to keyhole surgery which turned out to be a waste of time as I was miss-diagnosed.

After attending the neuro- science clinic and having 3 EMG's an MRI and blood work I was diagnosed with NMT/PNH.

Throughout this episode the trouble I had was trying to convey just how the symptoms felt. Apart from cramps I had no easily definable symptoms - lots of sensory stuff, but not easy to put into words. I had no tremors but the fascic's must have been present but I couldn't feel then and it was only when they where pointed out to me that I became visually aware of them

I'm not sure whether any of this is a help or a hindrance and even though I was miss-diagnosed, I still believe you have to put your trust in your Dr's

 

[LisaQ.]

With back-injuries the symptoms are generally at and below the level of the injury, thus, if your cervical spine has cord impingement, symptoms can occur anywhere from the neck down, HOWEVER it more often causes most pronounced symptoms in the upper body. The same goes for the thoracic and lumbar spine.

If you suddenly are unable to walk or control your bladder function, a neuro will look for a lesion of the lumbar spine. If you have a motorcycle accident and injure your thoracic spine, you will likely end up paraplegic in a wheelchair.

This is why facial twitching or head tremoring is generally thought to be unrelated to strictly spinal conditions, because the face is ABOVE the level of the spinal cord. I have both.

Blessings,
Sue