ALS or possibly Neuropathy?

[soccerdad]

Please bear with me as I’m new to this. This all started about 2-3 months ago. Like many new to this site I am extremely concerned about ALS symptoms I am having. I am about to turn 59 this month. I have to admit like many I’ve done the Dr. Google search thing on the web, but it’s hard not to do so and in those searches I think most of us who do so are looking to see if the symptoms we are having can be something else. This all started out when I noticed the loss of dexterity and strength in my left hand, the inability to button my shirt at times, turn off a light etc. If I work it out with a rubber ball the dexterity improves a little, and I’m starting occupational therapy next week. The only atrophy so far is between the thumb and forefinger. I was also having some pain in and below my neck which I thought may be related to all the time I spend in front of my laptop for work and after. I had l5S1 disc surgery twice, the last one 18 years ago, so I thought it could be related to a compressed disk since I had previous disk issues. I had a sore left shoulder (had frozen shoulder surgery about 10 years ago on the right one) and forearm weakness. My PCP ordered an MRI of the spine and it showed Cervical Spondylosis and some typical arthritis of a man my age. My PCP referred me to a Neurologist. He did an EMG and a diagnosis of Ulnar Neuropathy at the left elbow. While in his office he noticed some fasciculations in my left arm, and that was the first mention of the need to keep an eye on that for ALS… of course that turned me upside down and off to the internet I went. Looking back I can recall some twitches over the years, but the fasciculations in the left arm have gotten more intense and have wondered over to the right arm, occasionally in the face, and I just noticed some in the left leg yesterday. They seem to increase when I go through the stress of thinking about all this. I do get some tingling and numbness in my right arm and that comes and goes. I have had calf cramping where it totally locks up and is painful, but I’ve experienced that for at least 15 years or more. I’ve noticed a little more of it since stressing the last day or two. While I've always been a bit of a mumbler and have had trouble with my “L”s for years, speech has become more difficult, some days worse than others. I find myself clearing my throat more, can’t swallow that big vitamin like I used to, and swallowing has become more difficult but manageable for the most part right now. Today my voice started to get horse. My PCP ordered a brain MRI for the swallowing issue and muscle weakness, and it came back normal. As far as strength, I can still do three sets of 40 dips and 25 pushups on a dip bar I have, even with some weakness in that left hand and lower forearm. The Neurologist had me do some strength tests and I showed a lot of strength in the arms where the fasciculations are more active. He did a Brisk Reflex test in a couple of areas which was negative. I can walk on my toes and heels. Took a mile walk the other day and legs didn’t feel heavy, just out of shape. My breath has gotten a little bit shorter, but not sure if that’s due to no exercise over the winter or the stress of all this.

I have been a Type 1 diabetic since 1967 with good control and no complications to date. But I fully realize that after 47 years of diabetes Neuropathy could set in and possibly attribute to some of the issues I’m having. Based on the one EMG I’ve had there was indeed a diagnosis of Ulnar Neuropathy at the elbow. The Neurologist also indicated I have Carpal Tunnel Syndrome in that left hand I’m having issues with (misdiagnosed possibly?). He took a look at my throat and the muscles seemed normal. In my online research (I know… but I just had to!) I discovered that the following symptoms I have are symptoms of both ALS and either Peripheral or Motor Neuropathy: Fasciculations, Muscle Weakness, Cramping, Loss of Dexterity, Swallowing, Speech Impairment, Breathing, )though it’s only occasional shortness of breath) The tingling and numbness I have are symptomatic of Neuropathy, but not ALS. I’m totally stressed, and I know that stress can cause an increase of symptoms like fasciculations as it did last night as I couldn’t get this off my mind. If i can distract myself in other ways it's either not as active or as noticeable.

I have read a number of posts on here and value the input of many contributors. If you’re still reading this, my question would be the same as I Google for hope, and that is “Can I have multiple symptoms of ALS and still not have the disease?” Many of the symptoms I have point to it, some of the tests don’t. Is it still too early to tell? I’ve read a number of posts about the waiting game involved with all of this. Thank you in advance for your input.

 

[Dusty7]

“the following symptoms I have are symptoms of both ALS and either Peripheral or Motor Neuropathy”

Fasciculations—lots of causes, many of which are benign
Muscle Weakness—I don’t see any clinical weakness…did you read the stickie?
Cramping—could be vitamin deficiency, drugs, lactic acid, dehydration, low calcium, potassium, magnesium or other things
Loss of Dexterity—very subjective
Swallowing—ALS swallowing problems typically begin with water and thin fluids
Speech Impairment—not enough to come to attention of your PCP or neuro, right?
Breathing, though it’s only occasional shortness of breath—sounds like age & conditioning, not ALS
Tingling and numbness—sensory and not ALS

So, to your question, “Can I have multiple symptoms of ALS and still not have the disease?”, my answer would be that I don’t see “multiple symptoms of ALS”. The neuro obviously didn’t see them either. And neither did any of your tests. Relax. Go kick a soccer ball around, or go for a walk and get your breathing back in shape.

 

[Atsugi]

"If I work it out with a rubber ball the dexterity improves a little" -- definitely not ALS. ALS doesn't improve with exercise.

Your "thumb and forefinger, neck, left shoulder and left elbow." show no signs of ALS.

"fasciculations...increase when I go through the stress of thinking about all this." --very common signs of stress.

"tingling and numbness, calf cramping where it totally locks up and is painful" -- totally not ALS.

"clearing my throat, can’t swallow that big vitamin" -- doesn't sound like ALS.

"40 dips and 25 pushups, took a mile walk, breath has gotten a little bit shorter" -- certainly not a complaint of ALS patients. You're stronger than most 59-year-olds.

"after 47 years of diabetes Neuropathy could set in" -- very possibly you're right. Especially if you're overweight.

"Can I have multiple symptoms of ALS and still not have the disease?” -- absolutely. These are rather common symptoms of many diseases. Unfortunately, google points these symptoms to this website. That's because so many people post here do not have ALS.

ALS is such a rare disease that doctors must rule out everything else first. You have not described ALS at all. In my non-doctor opinion, you can rule out ALS because you have sensory problems instead of permanent and obvious weakness.

I know it's silly to say stop stressing--you'll stress anyway. But I recommend you stress yourself about some other disease. From what you've described, you're wasting your time looking into ALS. Good luck.

 

[soccerdad]

Thanks for your response Dusty7. You asked me if I read the sticky. I'm new here. Would you be kind enough to let me know where I can access that sticky? Thanks.

 

[soccerdad]

Thanks Atsugi. The Neuro was the one who put it in my mind when he first saw the fasciculations, and of course I panicked and ran to the web. I guess that all those things seemingly hitting at once has me scared. I appreciate your response.

 

[Clearwater AL]

Right above the title of your Thread you click on to open it. Kinda hard to miss being your Thread is at the top now.

 

[soccerdad]

Thanks Clearwater AL... I found and read them.

 

[Mediasmart]

We should recognize that less than full blown EMGs have results that are often masked or buried under advanced neuropathy. Highly experienced neurologists with great equipment and technique can get through the clutter so my advice is if you are serious about pursuing, go to a clinic with a good reputation in the area.

Having needles stuck in your tongue isn't fun but you can get to a conclusion faster.

 

[soccerdad]

Thanks Mediasmart...much appreciated.

 

[zoohouse]

Soccerdad, I have to question the skill of a neurologist that would point out the fasciculations in your arm and mention ALS but not mention that they can be caused by the neuropathy. I have had C5-6 disc surgery with fusion, and have been left with a neuropathy with fasciculations. I don't think that there is a person on earth that is over 40 that hasn't experienced twitches in many places in their body. I remember once looking up what could cause a person to bite their tongue or cheek frequently as I seemed to be doing a lot, and up came ALS, I shook my head and decided it was just one more weird thing that I would experience in my life (the tongue biting) and some where along the line it stopped.
Seriously, we all have many symptoms of many things in our lives that come and go, and when my husband started presenting his symptoms I knew without a doubt that it was ALS. I have been an ER nurse for over 30 years and seen a lot of different things. EMGs for ALS should be done on no less than 3 limbs. The neurologist you saw was not very professional. Atsugi made some very good points, so try and let this go and get on with your life. Don't waste your time worrying because if it is ALS it will show its ugly head soon enough.

Paulette

 

[soccerdad]

Thanks Paulette. I did a follow up with the neurologist and was not happy with him… I’m going for a second opinion then hopefully just let things go. Just to clarify, he did diagnose a ulnar neuropathy. As far as the EMG he tested both arms, but that was it. Feedback from both you and Mediasmart both suggest a more comprehensive EMG would give a better feel. I guess it’s just that all the things I mentioned starting happening at once, fasciculations which have gotten more active and moved to other limbs, the lessened dexterity and strength in the left hand, the throat clearing and swallowing changes, and speech getting more challenging… hence my rush to the internet like it seems so many do. Thank you for your input, I truly appreciate it.

 

[Mediasmart]

Just for kicks, which hand is going to pot and which is your dominant hand?

At first I had an ulnar nerve transposition done and then carpal tunnel surgery. Both were 100% successful. 2 months later my hand was 1/12th the strength of the other. You see, they had to rule that out as well.

Again best advice is to go someplace where they routinely perform EMGs to give the yes/no for ALS. Go someplace really good as there is as much "art" to the test as pure science.

 

[soccerdad]

Mediasmart. My left hand is the one I'm having difficulty with, along with the forearm. My right hand is dominant. The neurologist diagnosed carpal tunnel and I am going to start physical therapy on it hopefully this week. Once again, I got concerned when all of this started happening together. Thanks to your post I am researching the best place for such an EMG. Thanks.

 

[Mediasmart]

My hand Doc has a great bedside manner; very straight up and was the first person to catch the ultimate diagnosis and actually right in his office called my neurologist, thanked her for the referrals for surgery, yes yes yes, 100% successful, now I'm sending him back you to for his MND. He looked at me and said he was tempted to say to her "The surgery was a magnificent success but the patient died".

 

[Mediasmart]

Mediasmart. My left hand is the one I'm having difficulty with, along with the forearm. My right hand is dominant.

There is some statistical evidence that limb onset ALS doesn't start with the dominant hand and attacks both legs often at once as there is no such thing as a dominant leg unless you are a kicker in football perhaps.

Good luck. Wise choice in finding the best clinic you can.