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jim_bravo

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Age: 25
Ethnicity: Caucasian

Self-Symptoms (up-to 4 months):

- Pins needles (although occuring less recently), especially when something is digging into nerve higher up the limb. Of course this is natural, but the effect is much more pronounced than in the past. First symptom noticed (although things like weakness and fatigue are kinda vague, and could have been missed for ages).

- Internal muscle twitching - can occur anywhere, and are very on-off, but absolutely the most noticeable symptom

- Tremors, Dexterity? - especially ossociated with upper arms with tasks like, say, drinking soup with a spoon etc. - Possibly the tremors have decreased recently. Possible loss of dexterity in the fingers - especially the left hand.

- Involuntary reflex - sudden jerk of body, limb or finger. Especially noticable in bed, but has occured in other situations too.

- Fatigue - Holy cow. I can't finish a day properly. It suddently hits me in the evening. Could be stress-related through disease worry, or lack of eating, rather than a symptom itself, but is absolutely undeniable.

- Cramping - especially in the shins and ankles. Medium severity, and easily walked off. Also, alot of smaller mini-cramps (small in both pain-level and duration)

- Double vision - I slip into double vision often, and then have to focus hard to get it back. Worse in some days than others. Not a ALS aymptom, but explainable by stress or fatigue? In all honesty, I'm kinda hoping this to be an MS sign (with all due respect to MS sufferers, I'm that desperate, as we'll see later in the EMG section).

- Throat? - Strange feeling in throat. Seem to have a lot of mucus to cough up, which do so. But then it seems to build up quickly again. Could have always happened. I've never been this observant of my body before.

- Left arm atrophy? Weakness? - The big one. I'm right-handed, and have always been aware of being less-impressive on the left (biceps/forearms). However, I cant help but think the difference was always as big as it seems now. A bone on my left sholder points out clearly, while is completely submerged in muscle on the right. Also, my left arm is weaker, and shakes, fails and aches when I test each arm with similar weights. Again, I'm sure the dominant arm should naturally be stronger, but by how much?

- Yawning? - Yawning attacks. Being aware that thinking/worrying about yawning causes yawning (especially having read about it on ALS symptom lists), this is a hard one to gauge the validity of.

- Tripping? - Tripping a lot recently. However, I have just moved from the ultra-save UK to Bangkok which has loads of tripping oppurtunities (wrecked paving slabs, random unsigned tripping hazards), and I have been wearing flip-flops (which force a foot-dragging step to keep them on). Also, I been in a daydream of worry and thought while walking, and dont really look out for hazards.

- Voice? - Every slurred word and stutter has me in a panic now. Maybe has always happened at this kinda freqency, and maybe am putting a lot of pressure on myself when I do speak. Really not sure.

Doctor symptoms:

- Reflexes - Very violent patella reflex. Noted by all 4 doctors who tested me.
- Weight loss - 90kg to 83kg in a month - but I barely eat, and walked around hot Bangkok a lot recently, for sometimes many hours at a time. Explainable for sure.

NCS Study:

- Normal distal motor latency, normal CMAP amplitude and motor NCV
- Normal sensory latencies of various nerves
- Low-normal F-wave latency - bilateral tobial and peroenal nerves
- Normal F-wave study in median/ulnar nerves

EMG 1: (Neurologist Sidipa Chotchaisathit, M.D.)

- Increase insertional activities, few spontaneous activities, Fasciculation and polyphasic MUAP, late response and large MUAP (0.2-10mV), long duration (8-12ms) and reduce MUAP recruitment of bilateral 1st DI muscles, at bilateral 1st DI, Tibialis anterior, Lt Vastus femoris muscles.

- Normal insertional activities, no spontaneious activities, few fasciculation and polyphasic MUAP, late response and large MUAP(0.2-5mV), long duration(8-12ms) and reduce MUAP recruitment of bilateral Vastus medialis and Lt. Biceps brachii muscles, at bilateral 1st DI, tibialis anterior, Lt Vastus femoris muscles

- Normal insertional activities, no spontaneous activities, normal MUAP of Orbicularis oris muscle (mouth)

- Interpretetion: Needle EMG showed sign of membrane instability, fasciculation and chronic denervation neuropathic pattern in general limbs, esp. bilateral 1st DI muscles, but still normal study in bulbar muscle.

- Most likely cause: Motor neuron disorder disorder was probably

- Moderate inact neur: Left bicep
Pronounced inact neur right quadricep
Pronounced subac neur Left quadricep, left hand, right hand, left shin, right shin
Normal: Left mouth


Holy shit. Ok, the hospital will arrange a re-test with their neuro-muscular disease + EMG specialist Dr. Kongkiat Kulkantrakorn, M.D. the next day... Looong 24 hours...

EMG 2: (Nero-muscular disease and EMG specialist Dr. Kongkiat Kulkantrakorn,M.D)

- Study requested to rule out myopathy and MND. Previous NCS was normal, but EMG showed positive sharp waves, and some large polyphastic motor units.

- EMG of left EDC, both biceps, right ATB, right medial gastrocnemius and right tibialis anterior were normal. There is no positive sharp waves, fibrillation or fasciculation in all muscles examined. Motor units were normal in morphologies, firing rates and recruitment pattern. Interference pattern were also normal.

- This is a normal study. There is no electrophysiological evidense of acute or chronic denervation in 3 limbs. There is no evidense of MND or myopathy. Clinical correlation suggested.

- Normal: right bicep, left bicep, right shin, left calf, left behind forearm

Maybe I'm just another under-aged hypochondriac pestering people with more important things to take care of, but the twitching and THAT EMG result made me feel like it was all over for me, until some other guy clears me 100% 24 hours later.

What is going on?! Is the 1st doctor completely incompetant with the test? Is the 2nd doctor hiding something (he just repeated I'm too young for it, etc.). Can a sufferer have days where they show false-negative? Can a non-sufferer (not necessarily ALS, but MD etc.) show a false-positive? Could my stress-level etc. EMG affect results? When I took the 2nd test I had accepted I was in deep trouble, and I think I'd had a drink or two the night before.

2nd doctor pushed me in direction of some vague benign fasciculation/cramp syndrome, and poo-pooed the 1st EMG. This explains cramps and fasciculations, but very large patella reflex? Possibly the yawning thing?

As far as my shreads of hope go. Double vision and tingling/pins-needles don't seem to be classic ALS (although pins/needles is a ALS symptom on Wiki I think, and a few other places). Also, as I heard a millions times, "I'm too young". As far as I'm concerned, if I failed a EMG on 4 limbs and Hawking got it at 21, I'm gonna fear the worst. The 2nd EMG, though, has now put me in a huge limbo situation, where I dont know what my future is, and I'm living in a bit of a zombiefied state.

Please help..:(
 

AHands

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You've got to relax. I've had this for over three years now, and they still haven't positively diagnosed it because there is no test for ALS, they test for everything else, and if its all negative, and you're declining fast enough, they call it ALS.

I'm 44 years old and after three years have one bad arm, one worse arm, weak back, weak neck. wasted feet and troublesome legs, twitching and cramping that comes and goes. You're not much more than half my age, so, if it is ALS, it will probably progress even more slowly--I doubt you'll get a positive diagnosis for many years, unless they diagnosed it as something other than ALS. I know thats not easy, but I want you to be prepared for a long uncertainty. Try to relax, maybe try yoga or meditation, take care to enjoy life. Maybe you could spend a little time helping a patient less able-bodied than yourself--build up some good karma. Watch a sunset. Life is fleeting, even for the healthy.
 

sironside

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I'm not an expert (just a nursing student) but my mom is a psychiatrist certified in neurology and she said more often than not, EMG's have a tendency to give a "false positive". This is why docs usually administer this test after a battery of other tests. I hope this helps
 

jim_bravo

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A bit of an update:

- Doctor confirmed I have smaller left hand muscle (below little finger), forarms, upper-arms and shoulder. I am right-handed so it could be a always-present natural thing.

In the hand, it the muscles below the little finger on the side of the hand. On my left hand it looked 'suckered' inwards, and always has a much greater crator/depression than my right hand in all positions. Is this natural in the non-writing etc. hand?

- Noticed a few face twitches recently. Not many. Just around the cheek.


Kinda dissapointed with response so far. Anyone can offer anything on false-negative vs. false-positive EMGs?

'Chronic denervation in 4 limbs' and 'zero denervation in 4 limbs' are somewhat different, and I'm still at my wit's end to know what is going on.
 

wright

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Hello Jim

From what I'm reading from your post, all four of your limbs have been affected at once, along with your speach. That's not typical of ALS at all . . . not even close.

As far as the EMG's: it is an art when administering them. My guess is that the second neuro that did your EMG was the "expert" which is why he was called-in to do it. If he cleared you, then I think you're safe.

One other thing you have in your favor is your age. It's incredibly rare to be diagnosed with ALS at your age.

It doesn't sound like you have it. Take care.
 

jim_bravo

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Well, the 4 limb thing is mostly from the 1st EMG result, which showed denervation, positive sharp waves, membrane damage etc. in all 4 limbs - especially in the extremeties.

However, from my own feelings on my body, I would say that my left arm is by far the worst. It aches when I carry things - even very light things. Holding my mobile in conversation for a long time make the left hand ache too. Not only this, but its the arm that looks atrophied. It looks so thin that one hospital x-rayed my neck to see if there was something trapping the nerve down the right arm.

My legs are weak for sure, but not on the same level as the left arm. Heavy legs etc. My legs did start to shake and buckle after a bike ride the other day. I'd chance a guess that my left is worse than my right.

My right arm looks and feels pretty strong. Although, the fascics and occasional cramping symptoms do occur in that arm. The 1st EMG did show 6 months of denervation in the right hand though.

As for bulbar symptoms, they are by their very nature hard to interpret. The voice thing you mentioned was a '?' symptom, and maybe isnt a symptom at all.

Doctor says my refelexes are too brisk for something to not be wrong. What else can cause the reflexes? MS or BFS? I guess that if the thin left arm is 'natural' ultra right-handedness, and the 1st EMG reading was indeed carried out by a moron, these 2 illnesses would suddenly be pretty good fits.

Double vision is an undeniable problem though. Could this be a by-product of fatigue (therefore can still be linked with MND), or is it something to lead me away from MND?
 

AHands

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upper motor neurons (UMNs) connect the brain to the spine.
lower motor neurons (LMNs) connect the spine to the muscles.
brisk reflexes are a UMN symptom
MS affects LMNs (motor & sensory)
ALS affects UMNs & LMNs (motor only)

double vision, i don't think, would be an ALS symptom.

keep in mind that if they do eventually diagnosed you with ALS, theres no real treatment anyway. its not one of those diseases where its important to catch it early.
 

jim_bravo

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Went to see another neuro today, armed with EMG graphs/reports...

He concluded I have likely left hand atrophy, and that the 1st EMG conclusion was correct given the printed evidense of the graphs...

Its hard to get things from these guys, but I eventually got him to admit that he fears this is MND.

He recommended my immediate repatriation to the UK (I been studying in Bangkok), and the long process of ruling out the alternatives in a country where it won't cost a fortune.

Says that double vision and pins/needles (barring very rare cases) work in my favour, but he didnt like what he saw.
 

jim_bravo

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I feel like I talk to myself in this thread, but what is the nature of these 'false positive' EMGs?

- Poor test technique giving positive scans (i.e. graphs correctly analised)?

- Correct test technique but graphs wrongly analised (probably ruled out in my case but 2nd Neuro looking at the scans and agreeing with the conclusions)?

- Small period of body miss-behaving at time of test?

- EMG Machine malfunction?

Plus a few more questions:

Also, does ALS cause increased problems pins/needles and numbness ('dead limb') when limb is compressed higher up the limb? This was the first thing I noticed at the very beginning, and I can't find any evidense for this and its relationship to MND.

Is MS double-vision correctable (i.e. can refocus the eyes after slipping into it), or is it a genuinely unremovable problem for that period of time?

To what extent can shoulders, biceps, forearms, triceps and hands naturally smaller in muscle mass on the unfavoured arm, compaired to dominant arm, of a person who doesnt work out?

Ignoring the EMG result (which had my right hand as being very denervated), and going on my own feelings (left arm weak, legs medium/weak, right arm strong), is this an unnatural course for ALS? Shouldnt it affect accross to right arm primarily before the legs? Even though the right arm does get fasciculations/cramps, it looks and feels in great condition.

This is an awful time. Two neuros have now said ALS/MND is the most likely explanation, one said MS and one said BFS. Not a great ratio. Another EMG at a new hospital would be very informative (with no prior mention of my previous 2 results), but I'm almost too scared to do it.
 

puzzled36

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Jim, you sound very similiar to me. My issues started 2 years ago with numb/tingling in upper arms, they fell asleep often. Also had problems with swallowing and occasinally saying a word incorrectly, not really slurred, just wrong. 2 years later I have weakness in all extremities, twitching everywhere, visible atrophy to distal fingers, palms and toes, and slightly worse bulbar symptoms. I have had a muscle biopsy which shows atrophy and variable fiber size, my swallow study shows weakness in tongue base and swallow reflex slow. All other reflexes hyper along with hoffmans and jaw jerk. I am followed by MD pestronk in St. Louis and also just returned from mayo. they dont know what is going on with me, only that something is. I also have blurred vision and all my symptoms started pretty much globally (bulbar + 4 limbs). I think with me they are possibly leaning toward multiple system atrophy because I also have decreased sweating and some autonomic urinary issues. I know how you feel and I'm sorry you are going through this. Hang in there!

Gina
 

mamaoftwo

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Jim - was your 3rd neuro a Nueromuscular speciaist? I ask because I would be more inclined to believe what your 2nd emg said, given that you were referred to him for an expert opinion.
For what its worth, I have been there too. First emg was 'dirty' (performed by a physiatrist), 2nd by neuromuscular specialist was normal study and the 3rd, by another specialist was also normal. It is very confusing, I agree. I am still none the wiser after almost 2yrs.
 

wright

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I have had discussions with two neuros . . . one who used to be at the John's Hopkins ALS center and the Emory ALS center (he does nothing but EMG's and publishes scientific journal articles dealing with EMG and is as smart a person as I have ever met, so I trust what he says) . . . and the other from the University of Cincinnati Neurology Department (which is now an ALS certified center) about clean EMG's in early ALS. They will be clean if there is strictly upper motor neuron damage. You can also have clean EMG's with lower motor neuron signs if it's early enough AND if you don't have any muscle atrophy. However, if the EMG is done by someone competent and experienced AND if done on enough limbs and tongue . . . AND if done on the muscles that have atrophied . . . the the EMG is invaribly going to be "dirty." Does it mean you have ALS? No, not necessarily; many other things can cause weakness, atrophy and "dirty" EMG's. If you have atrophied muscle and the EMG is clean, then that is a very good sign and means that the muscle has denervated but has "healed" so to speak. The thing with an atrophied muscle, however, is that there is no guarantee that it will "grow back" to normal. Sometimes it simply doesn't.
I have seen on many occasions how someone has stated that they had "clean" EMG's initially and then a "dirty" one and is diagnosed with ALS . . . and find out that the first "clean" one was not done very thoroughly or in the right muscles or they have upper motor signs or they were bulbar onset and it was done just on the limbs, etc. All of this talk about "clean" EMG's not having much meaning is too doom and gloom. Again, if done correctly and read by someone competent, is a very good sign. Will there invaribly be rare exceptions? Of course, but the odds are with you that all is alright. Take solace in that please.
 

wright

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Clearing-up some more things

One more thing to add. I want everyone to go back to the link that AHands posted and read it carefully. I bet everyone with clean EMG's got scared by Jeff Schaffer's comments (he is the one who posted first that indicated he had clean EMG's initially and then got diagnosed with ALS). If you continue to read the entire thread, he was diagnosed with PLS which later became ALS . . . and again . . . someone with PLS (i.e. upper motor neuron symptoms) is going to have a clean EMG.
If you continue to read the entire thread, that is the theme: upper motor neuron abnormalities will not show-up on an EMG; those symptoms can only be diagnosed clinically and not with EMG. So again, if you have lower motor neurons signs and a clean EMG . . . AND . . . it was done thoroughly and by someone competent . . . embrace that as something good.
As a further note: if anyone on here does get an EMG and you give your results, please indicate who did it, how many limbs, where your symptoms are, what your symptoms are, etc. so we all know how to interpret the results. It's only fair to the wonderful people on this site.
 

wright

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Thanks AHands

I never thanked you for that thread, Adrian. It undoubtedly helped a lot of people on here. I hope that all is well with you. Take care.
 
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