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jbear

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Sep 25, 2012
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Learn about ALS
Country
AU
State
nsw
City
sydney
Hi, I was going to post on my original thread but its closed. Well I got into see the Neuro 3 weeks ago, he done some testing confirmed that my right side is atrophying not just in the calf muscle but also my right arm is 1 and half cms smaller than my left and also the muscles in the right side of my face are atrophying also....seems its the whole side of my body going. I dont have any clinical weakness, at least he didn't mention it to me but my right side is a lot quicker to tired and shake when I am exercising...he did not mention ALS to me but he did say he thought whatever is wrong with me wouldn't be something that is treatable I would just have to live with it (what that means I am unsure). I have still been doing some exercise and when I do my right leg gets cramps, tight for hours after and general fatigued same with my arm. I have to go have my EMG this weekend, until then does anyone have any ideas what I could be dealing with, or any thoughts on my situation.

Thanks in advance Jbear
 
Hold tight, get the EMG. Anything before then is just baseless speculation, and you're risking a long dive into anxiety. The weekend isn't far away. Let us know how it goes.
 
yes I agee hold out for a long ride of fear and anxiety. god give you the stength , Its hard
I have no idea why neuros can say I dont know what it is bit its not treatable,
If it was a plumber you wouldnt pay them. Strangeb but true

Much love and best wishes Margaret
 
Like Beky says wait for the EMG. That not treatable comment from the neurologist is concerning. Without more tests, he really wouldn't know that. My husband went to his first neurologist for 2 years who said he picked up nothing of significance on his nerve conduction tests and EMG with husband's complaints of loss of fine hand coordination and weakness in hand. In the end we had to go to a neurologist specializing in neuromuscular disorders who found he had a treatable condition called CIDP. Hubby wasted two years with the first neurologist and suffered damage due to misdiagnosis. The second specialist did repeat EMG, NCV, lumbar puncture, and testing for autoimmune sensory motor diseases. He got a diagnosis from the second specialist with six weeks after having placed his trust in the first for two years. Good luck with your testing and get informed as we weren't and thought any neurologist would do.
 
really sorry. Its just a waiting game . very frightening. Strange if you employed a plumber and they dont know what it is but its untreatable would you pay them
, If he knows its untreatable how come he doesnt have any idea what it is, most people on here are not in denial they want an answer or some possible idea shame the neuros wont give it whatever it may be cause they me be sued I guess
Im in your boat too and know the difficulty
best wishes
 
Beat wishes for your EMG. Sydney has some of the leaders in the world ,in neuromuscular diseases, so you are definitely in the right place.
 
Hi everyone, well I went and had my Nerve Conduction tests and EMG today. The girl doing the NVC test said it was all fine and the Neuro done them EMG he didn't say much to me about it but I seen him nod to his assistant and then he went (there was general chit chat in between) I asked her what the results were and she said she thought that everything looked fine on both tests, but he will give me results when I see him in 2 weeks. So I am hoping this means no ALS if they are both good? Although he didn't put the needle into the muscle where the atrophy is I assume it would show up something anyway?

He wants me to have some genetic tests done at his clinic in the next few weeks.....so I am hoping that this Neuro is finally going to get somewhere with what is wrong with me he seems to want to help which is refreshing change lol.


Cheers Jbear
 
Glad hes trying to solve your problem . Thats a start. May still be a long wait but I hope its treatable
best wishes
 
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