Status
Not open for further replies.

Tb12

Member
Joined
Mar 15, 2013
Messages
27
Reason
Learn about ALS
Diagnosis
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.
 
Hey Tb12,

Listen to me. I am no expert here, but I want to save you some trouble. Since no one has responded yet, I think the reason may be because everyone has just finished with a similar case as yours, where it didn't look too much like ALS, but the person didn't seem to be taking their advice, nor the Dr.'s advice. If your Dr.'s are telling you that it isn't als, buddy, you had better be glad! This is not something you want to have!

Have you read ALL of the EXISTING posts? First, do that! Most of your questions have already been asked and answered.....numerous times, if you will just simply take the time to read THOROUGHLY through this forum, especially the threads that are closest to your concerns.

From everything I have learned here, you MUST have a 'dirty' emg before you can possibly have als! If I'm reading your post correctly, you have had two emg's, and both times they have told you that it WAS NOT ALS. Do not question it any further. All of your other symptoms can be caused from so many different things.

You have not mentioned atrophy, bulbar onset, foot drop, or any of the things associated with als. It sounds to me like you need a new spinal column....., but i do not see where you have this disease. Be VERY HAPPY if you do not, and stop trying to turn it into this.

If I am wrong, and you do wind up having als, you have my apologies......I am not a Dr. At that point, the people here will be very supportive and will welcome you into the 'club'. But I can assure you that you don't really want to be a member here if you don't have to.

I am just trying to save any further frustration for my friends who are very knowledgeable, and have tried very hard to help every new 'member' that comes here looking for answers. You have to understand that all new comers are panicked and desperately searching for answers, just like you. That is fine and good. However, if you will take my advice, and READ what is already here, I think you will see that als is not your problem.

If you do that, and still have questions, then feel free to ask. But PLEASE, read first.

I, like all the others, wish you well.
 
Hey there here4her, I appreciate your reply and MSG. Just to let you know I have not had 2 emg's I have had one and it was dirty, it showed chronic denervation in all muscles tested, hence my concern with my symptoms. The neurologist do not know what's causing the denervation. As far as foot drop and bulbar issues I don't have anything to serious in that area no, I do have weak and fumbling legs that shake and I have atrophy in my upper back. The neuro's have stated that due to my clinical exam they can't diagnose anything. The dirty emg has obviously got my scared, as I'm sure it would anyone.
 
Trent, been travelling overseas in the last five years? Asia, Africa, South America?
 
O.K., Tb12,

If you are truly seeking answers, and honestly feel like you may have als or some similar nmd, based on your dirty emg result, then please continue reading and searching for answers. Almost everyone has to go through quite a long period of testing, waiting, testing, waiting.....it can take years to get a diagnosed.
The one other thing that I would very strongly suggest to you, is that you spare us the details of your 'private appendages' and you sex life. No one on this forum is interested ay all in that kind of junk!

Fair enough?
 
Ok here4her no worries, thanks for the heads up. Terry, yes actually my symptoms all started about a month after I got back from America and Thailand, I got some type of food poisoning in Thailand and came home. Why do you ask?
 
This is a short list of some of the diseases that can be contracted in Thailand and some of your symptoms appeared soon after a visit there maybe you should look into it.

Here is the address I found Thailand Major infectious diseases - Demographics
Sound like some scary stuff.
 
This is only a guess but I would say you may have picked up a Tape Worm. Possibly the pork tape worm which can get into the blood stream, can cross the blood brain barrier and set up residence in the central nervous system. Again, purely a guess!
 
thanks to vicki m and terry, im curious do you know how i would even find out if i had a tape worm? and would my emg show cheonic denervation because of a tape worm? im guessing these are questions that would really be hard to answer?
 
Only a dr can explain that. Did you tell the dr you had been out of the country?
 
Trent,

After reading your first post, it did not strike me as being ALS but it did sound neurological in nature. Being well travelled, I knew
exotic worms are capable of making there way into the CNS, a quick web search on tape worms, I came across Taenia solium, the pork tapeworm, once you said Thailand I put this up as an alternative idea but still a guess. Sorry Trent its all yours from here but a quick web search I came across a Dr Sonny Lau in Melbourne -"His special interest is tropical diseases in returned travellers". Good luck, Terry.
 
Status
Not open for further replies.
Back
Top