strange reaction to EMG/NCV
 

I am a 31 year old male with possible ALS and I am looking for signs it is something else.
I had a very strange reaction to the EMG/NCV. After no problems during the actual test I developed extreme fatigue throughout my body later the same day. The fatigue is at its worse from 6-72h hours after the test and last up to 3 weeks.

I have had two EMG/NCV studies done. After the first one I found out that I had possible ALS. That night I awoke with massive fatigue which felt like I did not have the strength to breath. I felt if I did not wake my wife to call 911 within seconds I would no longer have the strength to communicate. I then got up to try and put some pants on but I passed out after a couple of steps. At the ER they concluded this was probably a panic attack which I think was what any good doctor would have done. However, I felt that the fatigue triggered the panic not the other way around and my heart rate never increased to over 100bpm. I continued to have general fatigue and weakness breathing on and off for weeks but they severity and frequency of these events was decreasing with time. Also the Dexedrine I take for ADD and narcolepsy seems to help a lot with the breathing. Over the next four weeks I recovered greatly and was able to walk about 6 miles a day at Disneyland over 3 days and easily run a 9 minute mile with only minor leg tightness. Neither of these activities produced any breathing weakness. I still felt maybe I experienced some kind of was a strange kind of panic attack. However, last week I went to the mayo clinic and I had another EMG/NCV test. This time I had my father a M.D. with me so I did not call 911 despite a very similar reaction. 24 hours after the test a pulmonary function test concluded my inspiratory and expiratory force was 30% and 40% of age adjusted normal. Also I have had low grade fevers for 4-5 days starting 24-48 hours after the test. I am hopeful that I will continue to recover from this latest EMG/NCV test and I am likely not to allow them to run another one unless I get much better.

FYI the multiple tests at mayo including the EMG showed that I do not have ALS yet but the doctors think that it will probably progress to ALS.
Also, I have a family history of sero negative autoimmune disease with onset around 30 years old. As you might expect I have no evidence of an autoimmune disease in any of my blood test (including multifocal motor neuropathy). This is not surprising since my other family members that have or had autoimmune disease have ever had positive blood work for autoimmune disease. Has anyone ever had or seen anyone with this reaction to an EMG/NCV? Also, since ALS is diagnosed by the symptoms a patient experiences and not by a causative agent, I think it is likely that ALS may really be many different diseases. It is possible that my EMG/NCV reaction is indicative of a particular manifestation of ALS and my reaction to the EMG/NCV might be useful to understanding how ALS is working.

do you have a serum B12 test results?
 

Was this ever done?
Anything under 500 should be treated (many doctors still don't know this, and labs still report 200-250 as normal which it is not)

Also long term use of amphetamines, causes a depression rebound, and exhausts epinephrine levels.
It is also important to have adequate zinc intake when using amphetamines.

Anyone with neuro issues should be taking adequate omega-3 food sources or supplements. These include flax oil and fish oil. When these are low, nerves cannot maintain their myelin sheath, and also firing is changed as well as neurotransmitter receptor functions. I have an EFA thread on Vitamin forum, with more depth.

Yes, B-12 was normal
 

I think my B-12 was around 600 but I started taking B-12 2500 mcg sublingual anyway as soon as the blood was drawn for the test. Also I started taking coQ10, vit E, B-6, folic acid and multivitamin. I will start on the omega 3 I agree this is a good idea.

I do not think dexedrine overdose would be confused with ALS but there was a recal on my medicine after I already used it so it is possible I got 2x my normal dose for two months. I think I would have to get creative to explain my EMG reaction with a dexedrine overdose at least two months ago. Possibly some ALS symptoms could have been caused by dex. overdose causing "multiple tiny lacunar infarcts in my basal ganglia" found on my MRI. If this is the case then my upper motor neuron lesion symptoms should not progress.
I will be very happy if this is the case.
Doctors do not know about the possible OD yet since I just got the recall 2 days ago. However, I did not notice any increase in heart rate over that time and I routinely check my heart rate since I started the Dexedrine.
Thanks for the response.
I will continue to investigate the Dexidrine angle.

interesting...
 

Since you are already taking the important ones...I have another suggestion.

It might be a good idea to switch to all activated B's.
That would be
methylcobalamin for the B12
Pyridoxal 5 phosphate for the B6 pyridoxine
methylfolate or folinic acid for the folic acid.

Some people do not convert well or at all. Methylation polymorphisms is a big subject now, and given your educational level, you can appreciate this subject.
Methylfolate is just coming back OTC from Solgar. It was removed by Merck to make more $$ for them by putting into RX meds. I am not sure it is available yet. There is a thread on Vitamin forum about it. But Folinic acid is OTC and not expensive. Source Naturals makes it. It is OTC Leucovorin which is used to supplement chemo patients.
So using all 3 activated forms of B12, folic acid and B6 might be more efficient for you. There is an RX version of this mixture called Metanx if you prefer and can get your doctor to write for it.

I already gave you some other suggestions in PM.

I don't understand your reference to possible OD? Is that short of overdose? One does not have to OD on amphetamine to have negative things happen. Just long term use can exhaust dopaminergic systems.