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reno-cg

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Nov 16, 2009
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Reason
Learn about ALS
Country
CA
State
Ontario
City
Singhampton
Hello, my name is Rory and I am new to the forum. Basically, I am very worried for my brother. Lately he has not been feeling well. He has been getting some symptoms that made me think of ALS since our great uncle died of ALS. His symptoms come and go, but he generally has them every day, at least a little bit. Some days are very bad. These include:

-nausea

-extreme weakness in his arms/legs

-awkwardness walking

-numbess or tingliness inside his head, sometimes in his feet, but always inside his head. Once the bridge of his nose was numb

-a week ago he had trouble talking (slurring his speech)

-fatigue

-his left arm looks smaller than the other, and he says that it is a pinched nerve in his left arm.

-he doesn't get an abnormal amount of muscle twitches if that means anything at this point

All of these symptoms come and go throughout the day. They began a few months ago and have gotten worse since they first began. He is 25 yrs old and was in perfect health before this began. He played basketball, ate very well, and was very happy with his life in China up until this point. I guess I am just looking for something that could help put my mind at ease. I have an exam on wednesday in my physics class and this is the last thing I need to worry about. In any event, you people have no idea how much respect I have for you. I have never, in my life, seen such compassion for one another in such horrible times. It angers me to think that the kindest people among us suffer so much. My thoughts are with you all
 
None of these sound at all like ALS, except the slurred speech, and that's not something that comes and goes. I don't know why ALS would even cross your mind.

It sounds like he should see a doctor, but I wouldn't worry about ALS.

Good luck on the exam.
 
I completely forgot to mention that he has seen 3 doctors already. Bloodwork, CT scan, and physical examination all were good which is a good sign albeit puzzling. He is going for an EMG and NCV on wednesday. THanks BethU for the quick reply!
 
The sensory issues (tingling, numbness, etc) are not things usually associated with ALS.

Your brother's EMG/NCV test will reveal much to the doctors.

Best of luck to him!

Zaphoon
 
Hi Reno,
With the sensory symptoms i.e. numbness and tingling, it seems more like a possible autoimmune problem. My husband has CIDP which for many has lots of sensory issues. And my husband does have a smaller right forearm due to atrophy prior to getting diagnosed. The nausea and parathesias in bridge of nose, gait disturbance, and fatigue have lots in common with Multiple Sclerosis (the nausea could be related to balance and vertigo problems that come with MS). So many neuromuscular symptoms are experienced in a whole gamut of diseases such as Myasthenia Gravis, CIDP, MS, --so ALS is probably the least likely. It is natural to wonder about ALS since you have a great uncle who had it. Your brother needs a referral to a neurologist who specializes in neuromuscular disorders. A MRI of the brain and spine would be useful to look for MS. And the EMG and nerve conduction studies should narrow things down--along with lumbar puncture. Let us know how things go for him. Best wishes that all goes well.
Laurel
 
Hi again, so far his condition has not worsened very much. He said that there was a period a few weeks ago where he thought he was getting better and that he even felt good enough to go outside and play basketball. This lasted a week or so, up until about 2 days ago when his symptoms returned; nausea, tingliness in his extremities, uncoordinated actions involving his hands such as typing etc. He had the EMG and NCV done and to the best of his knowledge, the tests came back normal. But he said that when he took the tests, he was feeling a lot better than he did during these "episodes." I'm still very concerned for his health because he is, in general, very healthy and active and now he has taken a drastic turn for the worse. Do ALS symptoms come and go over the period of weeks at a time? Do they also include tingliness or pins and needles? ALso, if ALS symptoms come and go, is it possible that an EMG and an NCV may not detect something like ALS in someone who is not experiencing ALS like symptoms (but still may very well have the disease)? I greatly appreciate everyone's input, best of wishes
-Rory
 
Hi again. Last night he experienced one of the worst nights of his life. He said that it felt like his nerves all over his body were acting up. He had horrible back spasms and leg jolts. He has now just told me that recently he has been experiencing an abnormal amount of twitching and spasms in his legs. Also, he has been experiencing, lately, that he has been dropping a lot of things. He says that the muscle weakness comes and goes though. The muscle spasms and twitches he has been getting almost everyday lately. He also feels like on the left side of his chest is weak. He thinks it is his heart, but I am too sceptical and think it has something to do with his lungs. One thing that is confusing me is that he said the EMG and NCV tests went fine. Are they fail-safe in diagnosing MND? Also, do these symmtoms sound familiar to anybody? ANy input is helpful, thank you.
 
Rory,

Given your brother's age (25) and that his EMG/NCV tests were within normal limits, odds are greatly in his favor that he does not have ALS.

It is extremely rare for someone to have ALS and it not be reflected in some way with an EMG . I'm not a doctor but this is something neurologists have shared with me.

Zaphoon
 
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