Do I have ALS?

[Artisto]

I am new to ALS forums. I have been reading other's postings this past week and really like the support being given at this forum. My name is Arthur, I am 38 years old. I have a wonderful wife of almost 15 years, with 2 children of our own and 2 older step children in their early 20's. So of course, we all are very concerned. I have not yet been diagnosed, but I do have my suspicions. My symptoms first started with twitching in my leg about 5 years ago, which was lasting for what seemed liked several minutes, on and off through out the day. I would best describe the sensation to that of a cell phone vibrating in my pocket. I would have to check my pocket each time, to actually see if my phone was vibrating. About 2 years ago, my twitching progressed to other areas my legs, arms, in addition to occasional numbness to my leg. I had MRI done on my complete spine, which showed buldging discs in my cervical, thoracic, as well as my lumbar area. I passed it off to being related to having a bad back. I saw Ortho, but opted not to pursue surgery unless I really felt I needed it. Being a Registered Nurse myself I kept telling myself that it was nothing and that if I was able to function everyday without any difficulties then I would be fine. I then woke up one morning with numbness to my left hand. I then saw a Neuro for the first time, which was still about 2 years ago. He did a EMG/NCV which showed Cubetal Tunnell Syndrome, similiar to Carpal but being a pinched nerve in my elbow. I expressed my concerns about ALS, the doc said most likely not, I was too young. He did a MRI of my brain, which was normal. After that visit, I did not feel to confident with the doc, feeling that something else was definately going on. I did my own PT exercises and stretching to my hands and extremities, which seemed to improve my overall symptoms. Now recently this past month, I noticed my left hand has much atrophy. It is actually 2cm smaller than my right hand. I have continuous twitching to the hand. I do not have extreme weakness, although I do have difficulty picking up small items with the hand. I believe if I baby my hand that it would become weaker. I have much stiffness in both hands and fingers. Always very tight. I have cramping in my forearm, in addition to occassional cramping to my calves and hamstrings. I feel like I have to continually swallow my saliva and when I do, it seems to be difficult as if I was trying to swallow a baseball. I have twitching to my face: cheeks, lips, eyebrows, and my neck. These areas only twitch, maybe once a day. I find myself having to take deep breathes all the time, even though I don't feel short of breath. I located a new neurologist that I would feel more comfortable and confident with. Get this, my previous neuro doc is no longer practicing in the area. I wonder? My appointment is scheduled for this next Monday, the doc is actually with an ALS clinic. I wanted to use this posting as an introduction as well. Looking forward to anyother's insight, good or bad. Wish me luck. My wife will be coming with me for support, she is sooo wonderful. I will keep you all informed.

 

[Kohler]

Hi and welcome; it's great that your wife is so supportive and that you're taking a proactive approach to your situation in regard to getting a second opinion. It seems a good sign that your first doctor didn't think your EMG indicated ALS, as even though you've questioned his competency the test itself is fairly reliable from what I understand. Anyway, there are many people on here with a great deal of experience and knowledge about these things who can hopefully weigh in and give your more information or perspective on your situation.

 

[joelc]

Welcome to the forum. I hope your new appointment gives some clues as to what is happening. As you likely know, twitching and numbness are not diagnostic identifiers of ALS. I hope it is something else.

 

[pops66now]

Welcome to the forum Artisto, I'm praying that they will find something cureable.
Keep us updated.

 

[Alexandre]

Hi Arther,
Where is the atrophy situated in your hand? Do you have weakness in it?

 

[laurel]

Hi Arthur,
Welcome to the forum. My husband has CIDP --MADSAM and is treated with IVIG every 3 weeks. I came to this forum in 2007 with his story which is similar to yours. He was diagnosed with Carpal Tunnel and nerve impingement just below his elbow, had surgery, and progressively lost function of that right hand. His thenar plane of that hand is totally atrophied as is his forearm. His first complaints were loss of pincher control with moving toggle switches in the cockpit of his aircraft, then it progressed not using being able to turn a key, or use eating utensils, excess salivation, fasciculations in his arm and right leg, cramps in the leg, some pins and needle sensation in his toes, foot drop, extreme fatigue. He had to go to a neuromuscular disorder clinic to be properly diagnosed even though he had been followed by a reputable neurologist for over two years who discounted his complaints initially with clean EMG and other tests and finally chalked it up to Carpal Tunnel. At the neuromuscular disorder clinic he did have a differential diagnosed; of ALS, but he responded well to the IVIG and then was diagnosed with CIDP. I hope that you have a similar outcome when you are seen. CIDP isn't great but we feel blessed that it wasn't ALS.
Laurel

 

[Artisto]

Thank you for your response. I will look into that.
Arthur

 

[Artisto]

My hand atrophy is located across my entire handed. Especially noted on both sides where the most muscle/fatty area would be. It looks almost like a skelton hand when held out compared to my other dominant hand. I do have some weakness in comparison to my other hand. I have ongoing fasciculations to that hand with cramping, stiffness and finger jumping and twitching.
Thank you for your inquiry.
Arthur