Cramp Fasciculation Syndrome aka Peripheral Nerve Hyperexciteability

[Angela0054]

I saw the questions regarding Peripheral Nerve Hyperexciteability and wanted to respond because I was diagnosed with it three years ago. It was very difficult finding information about it because it's not well known. I live in Philadelphia and am fortunate to have Dr. Albert J Tahmoush as my physician because he has published studies on this condition.

It is most often an autoimmune condition in which antibodies attack or interfere with a part of the nerve known as the potassium channel causing an imbalance which causes twitching, cramping and many other symptoms. It behaves differently for everyone who has it. Some people have mainly cramping while most of my symptoms are sensory. I have had twitching, burning sensations, pin pricking pain, muscle stiffness, vibrating sensations and others.

As with all autoimmune conditions my understanding is that they can go into remission, but that's rare. I have learned to live with it even though it has put a number of restrictions on my life. I am treated with Lamictal, an antiepileptic medication, and it works well.

There is more information about it at the following website:

http://pnhinfo.com/

I hope that helps



This discussion is related to Hyperexcitable peripheral nerve disorder.

[Angela0054]

Hi Margie,

I am so sorry to hear what you've been through but sympathize completely. At the beginning it's all very overwhelming and confusing on top of being sick alreay.

Dr. Tahmoush did one of the few studies on Cramp Fasciculation Syndrome and is located in NJ. Many people have traveled to see him since he's one of the few neurologists who understands this condition.

One website to see is: http://pnhinfo.com/

That website describes CFS symptoms, treatments and lists other research that's been done. It's very helpful.

I'll see what else I can find to add, but that's a good place to start.

[Missmargie123]

Angela:

I am so sick with cramp fasciculation syndrome.  It was diagnosed by a muscle biopsy of my thigh muscle, which was sent to UCLA, where Dr. Vinters made the diagnosis three weeks ago.  I have constant twitching, mild cramps, muscle aches, daily headaches and nausea.  I am weak, fatigued and in need of seeing a specialist.  You wrote that you go to Dr. Tahmoush.  My doctor has never even heard of CFS!  I have never asked for help from a stranger, but I'm asking for help from you.  Is Dr. Tahmoush an "Ace" in the field of cramp fasciculation syndrome?  Thanks!

Missmargie123 (Margie)

P.S. I need articles and books that have solid accurate information.  Can you recommend some?  Thank you so much, Angela.

[Angela0054]

Also, many neurologists will blame Cramp Fasciculation Syndrome on stress or mental health issues when in truth the condition itself causes a lot of distress which makes symptoms worse. Most doctors have no idea what it is or how to treat it. It's a diagnosis by elimination and patient anxiety becomes an easy answer rather than tests.