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Tb12

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Mar 15, 2013
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27
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Learn about ALS
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00/0000
Country
US
State
NY
Hey guys,
My names is Trent, i am a 28 year old male from australia who posted previously on this forum looking for opinions on my emg results and my symptoms, below i will write my symptoms, my emg results and my experiences with neuro's.

my symptoms:
before i start with my smyptoms i will note i have lower back problems that include disc buldges, spinal stenosis, disc disease and ostephites all in the lumbar region of my back and i have had these issues for a long time.

Symptoms:
percieved weakness and pain in my colar bone, shoulder and feet upon waking up, as well as a twitch or pulse feeling on and off in the bakc of my head close to my nack, my gp suspected fibromyalgia.

month later noticed my left quad muscle shaking by itself while
not being under any pressure or activity

2 days later i did gardening for my grandpa while using clippers i was struggling to cut branches of tree's and my wrists were in a lot of pain , i stopped for a rest and went to get a drink and realised my right hand was trembling and could not even hold a cup or reach my mouth for a drink and my fingers were moving by themselves like crazy after a few days it calmed down

about a day after that i played one on one b'ball with my friend for about twenty minutes afterwards i felt my fingers twitching like crazy on the same right hand, that night i went to bed i broke out in uncontrollable muscle twtiches all over my body, it was reslentless, i tried to fall a sleeep but everytime i fell a sleep i would have a limb jerk out and wake me...these symptoms have not gotten better and are worse after any exercise.

2 days later i had sexual intercourse and realised my legs were shaking uncontrollably and my upper back, lats were shaking as i tried to get myself upright.

day after my legs feel very shaking and weak and unstable and have weird feelings and fasics and some pain all the time

in certain postures my right upper back and nack shakes without being in activity and is weak this occurs sometimes on left side to.

i am left handed and footed yet my left calf, quad and knee muscle is smaller then my right and my upper back looks and feels unusual.. i bought this up to my neuroligist and he said it looks symetrical so dont stress about it.

i do experience pain in most joints and pins and needles and stifness in muscles as well.

when exercising my right upper side due to its lower stength and shakiness becomes a issue.

all these symptoms are on going and not improving every day i have constant twtiching and all symptoms above. yet i can pass a clinical exam and reflex test at this point.


Tests i have had:

tones of blood tests to the point that the dr has ruled out anything auto immune or blood related.

a mri of the brain which showed non specific white matter, which the neuro said was normal

and a emg that was abnormal and results below:
Coaxial needle sampling: the following muscles were sampled using concentric electrodes on the left side,tibialis, anterior, medial gastroc, vastus medialis, first DI, exterior muscles of the forearm and biceps. There was no abnormal insertion activity, there was no spontaneous activity, the interference pattern was not completely normal. This was a patchy process, both distally and proximally and there was some large amplitude units seen.

Comment: this is mildly abnormal study, distal motor latency, amplitude and cap, motor conduction and sensory conduction are normal where tested. Muscle sampling was not completely normal. There were no signs of irritability, spontaneous activity but the ability to recruit motor units was reduced in a patchy fashion and there were definite large amplitude units seen suggestive of some mild chronic denervation.

Recent neuro visits after emg results:

I finally got to see another neurologist to explain these emg results to me, he said he is unsure what it is but he does not believe my back problems can cause the denervation because the denervation was found in to many muscles for it to be back related. My clinical exam was fine, strength test and reflex test was fine, so the neuro said that he thinks it is not als and to come back at a later date to see him for another clinicla exam.

I wanted a second opinion so i saw another neuro at a hospital who said that chronic denervation shows up on 70 percent of emg's and she was not concerned and was also happy with my clinical exam and prescribed me some muscle relaxers..i didnt take.

however no one has given me any follow ups or extra testing or any advice and i am just getting worse and am unsure what this could be? i also would like to note that i have gynecomastia ( enlarge breast tissue) and have small testicles and urology problems ( blood in urine) that i have been seeing a specialist for for years whom cant figure out whats going on...i have recently found out that kennedys diseas has these symptoms and those that would mimic ALS.

If anyone has any advice on any of the above it would be great...and hugely appreciated.

Trent.
 
have you looked into benign fasciculation syndrome? Or maybe myesthenia gravis(sp)? Als starts in one foot or hand. It does not cause twitches all over until late stages and does not cause pain until late stages. You could also be making it worse with fear and anxiety. Try and relax and enjoy life. It is very doubtful that you have als.

Posting on different threads makes it hard to follow and respond. Try to stick with one thread.
 
Thanks for replying and for the advice. I guess the one thing that really concerns me is the abnormal emg finding of chronic denervation in my left leg, hand and arm muscles, which was the only side that was tested.. Can a abnormal emg of chronic denervation mean a lot of things? With my symptoms on top?
 
Trent,

Your posts in each of your threads contain far too much extraneous information. I think you are well aware of this; you're a smart guy! You know very well which symptoms relate to ALS, and which are totally unrelated. One may wonder about your motivation in sharing so much.

But I digress.

You've been to two neuros. thus far, I think. Both told you no ALS. I don't think we can tell you much more except perhaps you ought to see a third one. For your own peace of mind.

Sorry you have such a myriad of issues for a 28 year old, but in view of this, I cannot think of anyone on this site who can give you any better medical advice than you appear to be getting in Australia.
 
I think you should look at where you are 6 months from now and decide on a course of action then. Anything dangerous is ruled out, so it is just a matter of living with your symptoms and letting time tell you if they will get better on their own or need more poking and prodding. Why won't you take the muscle relaxers?
 
Trent, have you been tested for Kennedy's Disease? It can cause atrophy, chronic denervation, gynocomostia, and shrunken testicles. It involves a defect with a mutated androgen receptor gene. There is a genetic test for the disease. It mimics ALS, but it does not usually affect lifespan. Given your reported gyno and testicular atropy, I'd consider getting tested for it.
 
HI Trent

Here's why your doctor wasn't very alarmed. Denervation can happen when there is something pinched somewhere. It's a pattern of denervation AND renervation that is seen in those with ALS.

Has an MRI been done to rule out a pinched nerve somewhere?

Further studies should be done if your issues progress--but it doesn't sound like ALS to me. Why did you not take the muscle relaxers? if it is some sort of spasms causing the shaking, they might have helped.

Hope you get some answers.
 
Hey guys, thanks so much for all the advice and support. I definitely want to get tested for Kennedy's disease as if was to look at my medical history and symptoms now it mimics Kennedy's the most. I am also going for a MRI on my whole spine just to see what's going in that area. I recently have had a lot more fast paced twitches, weakness that is causing me walk to one side or fumble. And cramping like feelings in my hands and feet and facial muscles are weak and twitching a lot, so things definitely are not improving. Will keep you all updated.
 
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