Advice for next Neuro visit requested

[davegud]

I am a 37 y/o previously healthy male.

My problems started in July with fasciculations & cramping.

My initial Neuromuscular visit turned up abnormal "cramp potentials" on the NCS/EMG test.

From there I was told that I have some type of peripheral nerve hyper-excitability...maybe Isaac's Syndrome, maybe Cramp Fasciculation Syndrome.

For the last month, I have noticed small indentations forming in the thenar muscle in my hand. Started on the left, then the right, and the depressions are slowly growing. This is one of the areas where I get fasciculations.

I sent pics to my neuro and he indicated that it looks like atrophy and scheduled me for another NCS/EMG. He indicated that atrophy would not be explained by CFS or Isaac's.

What types of questions should I ask at this next visit? I'm not up on all the EMG lingo, but I would like to have some good questions for him.

Has anyone else been diagnosed with PNH, but then had atrophy occur afterwards?

Thank you.

 

[blee]

David,
You're the only one I've ever read to use the term "cramp potentials" on the EMG/NCV test. I too have had fasciculations and cramp potentials on my testing (done through Dr. Brent Beson at the ALS clinic in OKC) - he says that it is secondary and basically just says it's benign - I, too noticed some major dents on my foot that is always twitching, they decided to run a test on my Vitamin D which can also cause these sorts of things - I'm taking it for several months before we do a repeat evaluation - I have terrible cramps, muscle pain and twitching. If your EMG comes back normal, as I'm hopeful it will, and you haven't had any blood testing ran, do so. While the Vitamin D has not helped in the slightest so far, it *can* cause some funky symptoms so it's worth looking in to.

Is your hand the only place that you twitch and do you twitch/cramp all the time or just occasionally?

I've never heard of symmetrical wasting of the muscles but hey - I'm a newbie and I don't know much

Take care and let me know how it turns out - when is it scheduled?

 

[laurel]

Hi Dave. My husband has CIDP. He was misdiagnosed for several years with nerve impingement. First neurologist did EMG and nerve conduction of just the affected right hand and basically said it was carpal tunnel. Hubby had little dents in the thenar muscle and some minor weakness in that hand. He had the surgery and just got worse and worse. He was eventually referred to a neuromuscular clinic where they test all four limbs (which I think is a must), they did a lumbar puncture and found minor elevation of protein, and did sensory motor blood screening through Athena Labs. The first neurologist farted around for nearly 3 years--testing the one limb 3 times and saying he basically wasn't worried about a darn thing. Hubby wound up with an atrophied right hand and forearm and got to the point he couldn't turn a key or use eating utensils, and then got foot drop. One visit at the neuromuscular clinic and they tested all limbs and found abnormalities in all. He had a query of ALS in the beginning as he has a rare variant of CIDP. But all the wasted time, caused major damage as CIDP is treatable. He had to take early retirement from his job as an airline pilot due to all the farting around with the first neuro. They say that the administering of the EMG and nerve conduction tests has to be done by an expert. Obviously hubby's first neuro. was not an expert but what did we know? We thought all neurologists had the same skill level. Not so. Have all limbs tests, get a LP and blood work for autoimmune diseases , heavy metals etc. Good luck.
Laurel

 

[davegud]

Thanks guys.

I go in for the tests tomorrow thanks to a cancellation.

My neuro is in Boston and has a great reputation, so I trust him.

I will definitely ask about CIPD.

My bloodwork was all normal in July, but I should probably ask for a new round if they don't request it.

I have a history of weird auto-immune stuff, going back 15 years, so I always suspect auto-immune whenever I have weird things going on.

Keeping the fingers crossed for good results!

 

[davegud]

I'm happy to report that the emg ncs was good. I'm disappointed to report that Harvard Neuromuscular specialists are telling me that fascics and cramping in both hands and both feet as well as thenar atrophy in both hands are all being caused by leaning on my left elbow which was the only nerve that showed mild neuropathy? Are these guys so specialized that they can't look at the big picture at all? I guess its back to my primary care....

 

[davegud]

Laurel,
I am also a pilot. I would love to get in touch with your husband directly if possible.
Dave

 

[davegud]

Laurel,
I am also a pilot. I would love to get in touch with your husband directly if possible.
Dave

 

[laurel]

Hi Dave,
He doesn't participate on any forums, but I pass everything on to him. Our email is kitmo(removethis)@shaw.ca I'm sure he would be happy to answer any questions that you may have. Second and third opinions are always good. We regretted not doing that in the beginning.
Laurel