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gmussio

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May 10, 2012
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Learn about ALS
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US
State
Tx
City
Houston
First I would like to say that I am very much grateful for anyone taking the time to read this especially those stricken with the disease. This disease has made me aware of the fact that life is both fragile and should never be taken for granted. For two months now I have been stricken with grief at the thought of having this disease. It all started when I over exercised one weekend and felt short of breath for the next three days. I then started experiencing muscle twitching all over my body. I went to my GP and explained my symptoms to her and she told me that my shortness of breath probably has to do with GERD for, over exersicing but referred me to a nuero for the twitching. She saw my concern and told me that my reflexes were fine but it was always worth checking out. I had to wait two agonizing weeks of constant self testing. I even began to feel as if I had trouble swallowing and as of my toungue seemed heavier. I keep asking my wife if she has noticed any change in my speech at which she replied no. When I saw the nuero she said my clinical exam was fine. She told me that if I wanted to take ALS off the table I could alleviate my fears by going through an EMG. She test three muscles in each leg and then I asked of she could test my tongue to which she did. Everything was clean. Over all the EMG lasted 20min. She also did an NCV which came out okay. She is in her late thirties and went to Baylor college of medicine and even took up a fellowship relating to EMGs. She even taught at Baylor a bit. She also has seem a couple people with ALS and was taught by someone who is a leading researcher on ALS as well so I find it hard to question her results. She told she was 110% sure I did not have it. She could not pick up any fascics or anything that I had mentioned and asked me to work on my stress. Anyhow. After that began to work out vigorously to test my strength and ensure that I could spot muscle weakness quickly should it occur. My shoulder began making a wired vibration and my triceps were twitching even more. I also strained my toungue after squeezing food to the roof of my mouth to test it. It healed after a couple of days but I still feel like I have a little trouble with my tongue. Also I noticed a twitch in the muscle underneath my pinky of my left palm and a small dent next to the tendon that controls it that does not exist on my right hand and my left hand is dominant. No weakness yet. Also, I found a way to make my tongue twitch a little if I inflate it a certain way. It lasts for barely a second but it's there. I bothered my wife about it who finally caved and just told me to see the nuero again. I scheduled another appointment. She saw the dent and the tongie fascics but was hardly concerned. She did not seem as kind this time around. She did another clinical exam everywhere but this time focusing more on my arms, all was clean. I asked her to do another EMG on my arms because we did not do so last time. She said it was unnecessary and it would have picked up the disease on the legs and tongue even of it was in my arms. She told me it was unnecessary and that I had nothing to worry about to seek counseling. She told me the dent had probably always been there and that no one is perfectly symmetrical. I was shocked. Can I really be okay? My concern is that there is a guy who has an ALS blog since he has ALS he bikes to represent the disease. He said he percieved speech issues but that his exams including EMG were clean. His speech issues were unnoticeable to even his own wife. He finally felt the get worse and he felt weaker at gym. Still has cleam exams and EMG and tests and was told to not worry about it. He finally visited an ALS specialist that conducted more tests that told him it was probably ALS. It's very slow progressing and he has has it for 7 years now and still bikes with great difficulty and a special trike. I am very concerned that I could have the same thing. I really need help. I tried contacting wright for his opinion on the matter but still no response. I understand he is very busy. Oh, im also a 27 yo male. Anyhow. Thanks for your time and any advice. I is greatly appreciated.
 
To be frank, after reading 100s of posts in this thread, yourS shows a very disturbing level of paranoia. You need urgent psychological help. It was hard to believe what I was reading. You have no symptoms or signs of ALS, Dr and tests supporting that fact. Hurting your tongue testing it.........I could write a novel. Read the stickies at the top of the page, especially the one about health anxiety.

Don't believe a random blog. They have no basis in science, often written by health anxious people, who have nothing wrong with them, and they certainly have no training.

You can contact Wright, but be prepared for his honest opinion.
 
Ask the biker/blogger/lawyer for his advice. Obviously, he knows more than the neuros do. And much more than any of us here do. Use the Contact Us form on his webpage. I'm sure he'll be glad to advise you.
 
I am very sorry and you two are correct. I am losing my mind over this. I will seek counseling. Thanks for your strong but truthful words. They drove the message home. I am in a terrible place mentally and I need to get over myself.
 
You will get over it, with help. I've been where you have ( not so extreme) :).

Carefully read your first post and think about how it sounds.

To summarize.....you did the right thing, seeing a Doctor with your concerns. The doctor did a clinical examination, which was normal. To help with your anxiety, the neurologist agreed to carry out an unnecessary EMG. This confirmed that you were fine.

An EMG will pick up neuronal death before you are showing symptoms.

You have chosen not to believe either the Doctor or the " proof". Anxiety causes swallowing issues and twitching.......

So the vicious cycle continues.
 
Mr Mussio
You need to take a good hard look at yourself
Once you do, have a happy life and don't come back here
Good luck
Kitchener
 
I agree. Thank you. I wish you all the best.
 
gmussio, three points:
1)I have fasciculations all over (yes on my tongue too here and there) since the age of 22. I am 27 now. I have them everywhere, cannot go without them for longer than few minutes. My neuro exams are fine..and also I do have really asymmetrical tongue which I was obssesed about like year or two ago.

2) That biker, how could have he been diagnosed with ALS if his tests are fine? If for probable ALS one needs to have certain EMG findings.. So they diagnosed him based on what? How could they know it was not other MND like Kennedy (which progresses over decades).

3) You can have clean EMG IF the ALS starts with upper motor neuron involvement. Then there is only generalized weakness, reflex changes but NO fasciculations which are lower motor neuron signs. Since you have fasciculations and clean EMG, it is nearly definite they are not caused by ALS.
 
you wrote you have no weakness YET which sounds like you set yourself up to expect troublr. my motto is do not look for trouble.
 
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