Paging Wright!

[Guest]

I posted this in response to a thread by Inventor and Notme suggested discussing my EMG/NCS results with you. My neuro only sent me a summary, is that helpful to you or would you need something more specific?

"Inventor, I've been following your thread closely and feel like I could have written the entire thing myself! I too am rapidly losing function in both arms. It started a year ago with just some tingling and numbness in both hands. I had an EMG then and the only thing noted was "mild ulnar myopathy" at the elbow. My neuro basically said CTS, even though at the time I was experiencing other problems as well....horrid fatigue, migraines, insomnia and anxiety (completely and totally out of the blue), etc. Now a year later my hands and arms are just about useless. I'm dropping things, typing is extremely difficult, blow drying my hair sucks all the life out of me (my heart actually races like I'm having an aerobic workout). Because of my clean EMG and (two) NCS tests, the wonderful folks here (and my docs) say they do not suspect ALS, however my arms lose function daily, I have viable, body wide fasciculations, my left eye twitches constantly, and I'm 100 % exercise intolerant now (this is new in the last six weeks or so). I too have had every test known to man and they are still scratching their heads and telling me it's depression or anxiety which really is turning me into a crazy person. I'm grateful to say that (beyond m obvious health issues) everything in my life is exactly how I want it to be! I too will visit a lyme doc when I get home to the states (I live in China) but am not feeling too optimistic about that trip. I'm also hoping to get a muscle biopsy, to see if there is something mitochondrial going on. After that, I'm at a loss. Nobody knows what else to do with me. I've done everything my doctors have asked of me.....hugged it out with a shrink for six months, took their stupid anti-depressants, gave up coffee (back on it now because nothing changed), am eating a mostly raw (gluten free diet), etc and NOTHING has helped my symptoms one single bit. I too am at my wits end, as I have small children to care for and live in China where I have very little by way of a support system.

I'm sorry to hijack your post but wanted to let you know you are not alone. Do keep us posted and I will do the same.

To everyone taking time to post and to those living with this horrid disease, a sincere thank you. I continue to think of and pray for you all, since I started lurking here a few months ago."


Wright, EMG/NCS summary from one year ago (arms have gotten MUCH worse since then)

Motor Nerve Conduction Study:
The bilateral median motor action potential has normal distal late cues, amplitudes, conduction, and F wave latencies. There is slowing of the ulnar motor conduction velocity across both elbows.

Sensory Nerve Conduction Studies:
The bilateral mid palmar median sensory and bilateral mid palmar ulnar sensory action potential all have normal peak onset distal latencies, amplitudes, and conduction velocities.

Needle Electrode Examination:
The EMG study was performed with a mono polar needle. There is no spontaneous activity seen in all muscles evaluated. The motor unit action potential is also normal.

Impression:
Mildly abnormal study. There is evidence of mild ulnar neuropathy across both elbows.

Recent NCS from this month (different neuro)
NCS was performed on bilateral median, ulnar, perineal, tibial, and surreal nerves. Distal, motor, sensory velocities and sensory amplitudes were all clearly normal. Motor amplitudes were low normal in some of the examined nerves. Repetitive nerve simulation was performed on right spinal accessory nerve - trapezius muscle complex. No decremental response was found at baseline and up to five minutes after facilitation.

Impression: there was no evidence of neuromuscular junction disease/MG

And yet....
My arms feel dead Wright. Typing this (all with one finger) has literally fatigued me and caused me fasciculations in my arms/shoulders, as well as cramping in my shoulder blades.

I don't know where to turn next. I sincerely appreciate any insight. I have been able to put ALS to rest based on previous feedback from the fine folks here, but I'm still without answers and am getting worse daily.

Thanks in advance Wright!

 

[Guest]

Besides the findings of the NCV showing both of your ulnar nerves being pinched at the elbow (extremely common), that EMG is completely normal. Therefore, your problems are not due to lower motor neuron dysfunction or neuropathy or myopathy.

Fatigue and weakness can be felt for a gazillion different reasons. How is your bloodwork? Have you seen a rheumatologist? Has anyone mentioned chronic fatigue syndrome?

 

[Guest]

Thanks Wright.....
All blood work has come back normal
MRI is normal
CT scan normal
PET scan shows no inflammation at all
Rheumatologist says all good

And yet things are getting so bad, so quick. My arms started so mild and in the last six weeks have become useless. It seems to be spreading to both legs as well. I have constant fasciculations and now both feet feel like they are on fire (I know not a sign of ALS).

I swer my mind is 100% sound

I'm considering the possibility of mito....beyond that....I have nothing! Maybe environmental? I do live in China!

 

[Guest]

Lyme disease maybe?
But ugh.....I'm well aware of the controversy

 

[Guest]

lyme disease causes damage--damage would have shown on the EMG you had.

 

[Guest]

My EMG was a year ago and the only symptom I had at the time was numb hands. Would it still show?

 

[Guest]

Another possibility is a small fiber neuropathy (EMG's have difficulty detecting them). They are more common with diabetics but can certainly happen for many other reasons.

 

[Guest]

thank you Wright....
is there another way to detect such a thing? is there treatment?

 

[Guest]

It depends on what is causing the neuropathy. Sometimes there is and sometimes there isn't. I'm not at all saying that's what you have but it is a possibility

 

[Guest]

thanks Wright...I have an appointment with my neuro at the end of December when I go back to the states in December. I will be sure to ask about small fiber neuropathy.

So the fact that I have body wide fasciculations and the double arm weakness doesn't concern you? could it be a horrible coincidence? I've read up on BFS and I could easily fit the bill, but that doesn't explain the arm problem. I've also had dysautonomic symptoms for over a year (that's how everything started). I had one fainting episode, fainted on a tilt table test, then I've had a bunch of episodes of near syncope, but (touch wood) no actual fainting in over a year. My heart rate is weird too...constantly over 100 even when I'm in my most zen state. I'm very sensitive to heat now and cannot exercise.

I'm trying very hard NOT to consider the idea of multiple system atrophy, but the fainting thing has me suspicious. Wright, do you know if that would present on an EMG or NCS?

Any other ideas? I just feel so lost and don't know where else to turn.

 

[Guest]

Not suggesting that you should request this or that it might be useful, but my neuromuscular specialist ordered a QST (Quantitative Sensory Test). It came back with a number of abnormalities that were length independent. The consulting scientist that ran the test suggested looking at Sensory Ganglionopathy. Apparently it can also impact some motor function as well. No one's done any follow up on the recommendation other that recently starting with Gabapentin as prescribed by my pain management specialist.

The first time I had an NCV, the consulting neurologist also did a quick Sweat Response evaluation which showed some minor abnormalities. He mentioned the QST at that time but made a caveat that it's still fairly experimental and somewhat subjective as it depends on the patient's active participation.

But, to the point. There are some things that can apparently be done to test for small fibre neuropathy, although it seems to be one of those areas that is highly dependent on the medical facility and your neurologist as to whether they are considered meaningful.

 

[Guest]

Thank you Fitzroy
what kinds of things does a QST look for?

 

[Guest]

Use the terms QST and neurology in a look around the w e b.

I'm no expert on the subject but there are a ton of papers. The NIH and the Government Guidelines results are good non-biased summaries. Insurance companies consider it experimental and thus not paid for. My neuromuscular doctor had me go to Royal Melbourne to the Neurophysiology department for the assessment. I have no idea if I was just a datapoint in a larger study, but I never saw a bill.

 

[Guest]

Thanks for the info! Sounds like another way to look into neuropathy. I'll do some more reading!