Opinion about a 2nd Opinion

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Tj1974

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Hello, thank you for this forum and your thoughts about my situation. I pray there is a therapy for this awful illness soon for all effected by it.

Sorr for the long post. I’m a 45 y/o male. Over the past 2 years I have noticed my running pace was slower in general with the same level of effort. Also, from time to time I would get a little dizzy while cycling or running at a distance pace. Last April, I noticed my legs felt hollow when running. I thought I was over training even though I was doing consistent workouts. I stopped running and biking shortly afterwards.

Then in June19, I noticed my legs felt heavy (like I worked out too much) just going down the steps in the morning when I got up. But they were still fine throughout the day.

Also, in June 19 I first noticed being short of breath. At first it was just a slight need to catch my breath while sitting at my desk at work. I would wake up feeling normal then find myself short of breath during the day. In Aug I saw my GP who gave me acid reflux meds to try that didn’t work. The shortness of breath continued an increased in severity.

My GP then did a chest X ray which was normal. Also had a chest ct that was normal. I was refereed to a pulmonologist who did a lung function test that showed everything was normal. At the same time I saw a cardio specialist who performed a stress test that was also normal.

In October, I began to notice twitching on my left arm and got moderate shoulder pain on both sides. The twitching was also felt in my abdominal muscles. Now the twitching is though out my body and most noticeable at night.

My legs continue to feel weaker and weaker. I feel them shake when I walk down the steps. Also they feel tired and hollow now all the time sitting or walking. At night my arms and legs ache as if they have been overused or overworked.

My GP sent me to a nueologist in Dec physical exam was normal he performed an EMG and a nerve test on my right arm and legs Jan. I got the results a few week ago, all was normal. He sent me for a head and back MRI which were also normal. Th neurologist didn’t make an diagnosis, but said it wasn’t “anything bad”. He also told me I could seek a second opinion with another neurologist, which I found strange since this was only our second meeting.

Since seeing the neurologist I have developed tinnitus in my right ear that is nearly constant. My legs and breathing and twitching are the same or little worse.

Not sure what to do next. Does this sound worrisome for ALS? Should I get another opinion?

Thanks for your help and God bless.
 

KarenNWendyn

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Please read this if you have not already done so

It doesn’t sound like ALS for several reasons. First, with ALS there is no “feeling weak”. You just can’t perform certain actions such as standing on your toes or heels. Second, the neurologist found your strength to be normal on exam. Third, the pulmonary function tests were normal which would not be the case if shortness of breath were due to ALS. And finally, the EMG was normal. Clean EMG = no ALS.

Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described. Pain points away from ALS.

So you’ve also had serious cardiac or pulmonary disease ruled out. It’s back to the drawing board with your primary care doctor. Make sure you have a good general evaluation including laboratory tests. Keep hydrated. Pay attention to if you’re getting enough restful sleep and a proper diet.

The good news is you’re in the wrong place here.
 

Tj1974

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Thanks Karen you are very kind to answer. The legs shaking going down the steps is really the most worrisome for me. It’s what sent me to the neurologist. Hard to believe an EMG and physical exam is all he needs to rule out “the bad stuff”, but then I haven’t been to medical school. I’ll head back to the GP, if I get any diagnosis I’ll be sure to come back as others may find it useful. Best of luck to you, God bless and thanks again.
 

lgelb

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I agree that the GP is the best port of call for you. Diet, sleep, hydration, exercise, stress and positioning in bed and at work are all worth a look. And he is right, the normal EMG and exam do serve to rule out ALS given your symptoms. If you have not done so, even with normal PFTs, you could record your breathing on your phone at night (and there are apps) to make sure your breathing is not stopping, which would suggest a sleep study, also something to ask your GP about.

Best,
Laurie
 

Kristina1

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I agree with Karen and Laurie. Also, ALS does not start all over your body the way you've described. It generally starts in one spot and spreads from there.
 

Tj1974

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Thanks I will try the sleeping apps to see if I need a sleep study.

Good point on the entire body vs starting in one area and progressing.

There is so much information about ALS on Dr Google discussing “progressive weakness” and “twitches”, I appreciate your expertise to give me some context to what I’ve read which was very scary. I guess I was worried my doc missed something. Hopefully the GP can find the answers.

Thanks again and God bless.
 

Tj1974

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After discussing the new symptoms, I went back to neurologist today and he is now referring me to neuromuscular specialist. He said he still doesn’t think it’s ALS but he can’t do much further for
me.
He told me to expect the neuromuscular specialist to repeat the EMG and possibly to even more areas. something about they like to do their own studies??? I feel like this is a very bad sign. The neuromuscular specialist also run the ALS clinic in town which is even more frightening.
I am so scared. I have a young beautiful family. It will be a month before I can see the specialist.
 

Nikki J

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It sounds like the neurologist is just sending you because he doesn’t think you will believe his opinion. It is indeed extremely common for the neuromuscular doctor to want to do their own emg

the neurologist said he doesn’t think ALS. Nothing sounds like a bad sign at all
 

Tj1974

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It sounds like the neurologist is just sending you because he doesn’t think you will believe his opinion. It is indeed extremely common for the neuromuscular doctor to want to do their own emg

the neurologist said he doesn’t think ALS. Nothing sounds like a bad sign at all
Nikki you are so kind. Thanks. I feel so weak minded and selfish getting encouragement from folks that are fighting this awful disease each and everyday. I pray for everyone afflicted by this disease everyday. Ill hold off posting again until the specialist visit. God bless.
 
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