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Before writing further, I want to note that I have read the Common Concern and getting a diagnosis stickies. I hesitated to even describe my symptoms because several would seem to point in contrary directions from ALS. However, I'm going to post here regardless because (1) some symptoms do seem to match a motor neuron disease profile and (2) my mother has ALS and there is Parkinsons in her direct line of ancestors. On point 2, it's my understanding that a genetic link between ALS and Parkinsons has been contemplated.

So here goes: my main symptom has been stiffness and fine motor problems in my thumbs. Bilateral. I have trouble buttoning my clothes and applying pressure to a razor so that I can shave naturally. I drop things, sometimes after feeling what I can only describe as a spasm across my chest and shoulders. On cold days, I struggle to tie my shoe laces. All these symptoms seem to have come on in the past month.

I have numbness in my fingertips and shivering sensations up and down my arms. Sometimes these sensations extend into my face. My arms look skinnier to me. But, it's true, I can't claim that it's "impossible" to do anything that I've done before. It's just more challenging on the fine motor, hand stuff.


My internist diagnosed me with carpal tunnel. Neurologist did a full physical exam and noted both carpal tunnel and some ulnar compression. He could not explain why the symptoms came on so suddenly, in the last month. There is not much pain associated with the stiffness in the thumbs, though there was pain in the exam when he tested the median nerves.

MRI showed pinched nerves and disc herniation at the C5-C6 and C6-C7 levels. No lesions evidencing MS.

I feel weak overall. Shivering sensations. I see fasciculations sometimes under my thumb and wrist. When I wake up in the middle of the night, I sometimes see fasciculations, but they're most often concurrent with tightness and burning in my back near where the pinched nerves originate. Not much pain at all. Pangs and numbness.

Carpal tunnel braces have helped me to hold things. But my mother uses braces now as her fingers get weak from ALS; they help her too at this stage. Ibuprofen seems to help with the neck and shoulder and pain and some of the thumb stiffness.

That's where I am right now. I've scheduled an EMG, but not sure that I really want to go through with it until the holidays are over and until my symptoms have worsened. Maybe I won't ever be able to bring myself to go through with it.

What do you all think? I realize that most folks commenting here are suffering from a terrible disease, one I've come to know all too well from my mother. And at some level, since I don't have a diagnosis yet and don't have a treatment decision to make, my question is driven largely by anxiety. Note that the neurologist and the neurosurgeon (who considered my symptoms and MRI report over the phone and with whom I've scheduled an appt ) have not taken my ALS concerns seriously because of the physical exam and the sensory symptoms. But the fine motor control issues in my thumbs as well as the "spasms" that have led me to drop things leaves ALS very much in my mind. And, of course, I was with my mother at the numerous appointments where neurologists attributed her ALS symptoms to benign causes until getting her to an ALS specialist for an EMG . . . .

Also, for those of you who have had EMGs, what was the experience like? If there's another forum on which I should post that question, please let me know. I'm dreading the thought of hearing techs and doctors talking about denervation while I get turned into a pin cushion.

Thanks!
 

Nikki J

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As you say there is much that sounds unlike ALS. You are seeing a neuro so I would follow up with his/her plan.

Re the genetic part: Parkinsons is fairly common so I would not put too much emphasis on that. It is fairly unusual in FALS families for a child to get ALS at the same time as their parent. Generally the child's onset is similiar age or up to 7-10 years younger. Not etched in stone but that is the way it seems to go. And you are very far from documented FALS just now. It is common for family members of PALS to develop worrisome symptoms and this happens even with non biological family such as spouses. It is a terrible disease and if you are not FALS you may not have encountered it personally before and suddenly it is real.

Re EMGs: if your doctor wanted you to have one do so. If they said it was unnecessary and ordered for peace of mind ask yourself if it will give you that. Different people experience EMGs in different ways. My experience is not bad discomfort- not fun but ok. I think it is extremely unlikely that there will be discussion among the staff during the test. I did experience one doctor who dictated findings during the test but did not give the interpretation- meaning denervation was never mentioned just the abnormalities that meant denervation. Most EMG doctors simply do the EMG and make notes in the computer or on paper as they go. And denervation is not necessarily ALS anyway
 

preacherman

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Don't know about Nikki but as for me, I called the Neuro who did my first EMG a Sadist and I told him I would share with him any secrets that I was trying to withhold.

After the second EMG I apologized to the first Neuro...
 

WendyWooG

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I think the EMG experience varies. I had no pain with mine just a mild discomfort. I was warned before hand to make sure I was really warm, I was told it eases the discomfort and helps you be as relaxed as possible during the test.

When I told my neuro that the EMG didn't hurt he looked at me like I was a loonie and said when he and his fellow medical students did them on each other during his training he cried like a girlie. I do think being as relaxed really helps.

Wendy
 

Atsugi

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AnxiousWaiting: I didn't see any ALS in your post. Seems like your mind skipped over the common problems, like CTS, and went straight for the killer. Classic anxious person. Sorry you're in pain, and I'm really sorry to hear about your mom. You, however, will live long and prosper.
 
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Atsugi -- I hope you are right! I appreciate the encouragement. And thanks to everyone for sharing your experiences.

I went to the neurologist today and he continues to feel like it's carpal tunnel and the pinched nerve. However, after getting home I noted that I have definite atrophy at the base of my thumb. That's consistent with carpal tunnel, but so quickly? First noticed weakness in the thumbs 3 weeks ago. There's been a fasciculation in that spot for the past 24 hours, most visible after I take off the brace.

I chickened out on the EMG today. I'm concerned about the pain. I'm also worried about getting an ALS diagnosis. I have to admit.

I'd appreciate any thoughts. It's my sense that many ALS patients are often first misdiagnosed as having carpal tunnel.

I'm skeptical of the pinched nerve because I have little pain associated with that nerve and, usually, pinched nerves are extremely painful.

Thanks,

Felix
 

ShiftKicker

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You state you are skeptical it's a pinched nerve, but are not willing to pursue a proper diagnosis. This doesn't make sense to me. How can strangers who have not met nor examined you provide any sort of help when you refuse an examination that would allay your fears or confirm a diagnosis? That's a waste of energy and time better spent all round for you to go to a doctor and for the members here to support each other and not spend time addressing the concerns of someone who is not seeking appropriate care.
 

Atsugi

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Felix, after all this time and all the opinions, you're still talking about ALS? Now, THAT, my friend, is proof of a mental health problem. See your GP medical doctor.

I was able to watch the twitches and atrophy on my wife. Her first symptom: she tripped. A muscle in her foot did not hold her up. That muscle failed. She went directly to an EMG and got diagnosed.

Her right leg muscles began to fail, one by one. Then a hand got involved and the muscles began to fail, one by one. Her other leg and arm followed. With very little strength in a couple of fingers, she operated a Power Wheelchair to get around.

Then, we noticed her leg muscles were atrophying. That is, her legs used to be well-defined, because she was athletic. Now her legs were very smooth, because the muscles had not moved in months, they began to lose their shape and flatten out.

Notice the difference? Her muscles atrophied AFTER they were paralyzed. The atrophy happened BECAUSE the muscles did nothing, got no exercise, in months.

Finally, we noticed that some of her muscles would twitch. It seemed that the twitching was the last death throes of the nerve, just before that muscle became paralyzed. See the difference?

You even have found nerve pinches that would explain your symptoms!

IF it's going to take an EMG to settle this matter, then I suggest you go ahead and do it.
 
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Aftsugi -- I am very sorry for the loss of your wife.

Shiftkicker -- I understand now. Thanks.

I am now on the calendar for an EMG at an academic institution. It will be a couple of weeks before I go in. The weakness in my thumb is most evident when I try to open a bottle.

I appreciate the earlier point about FALS and their age range. Thank you, Nikki, for the clarification. I had no idea.

All: thanks for your patience.
 
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All -- thank you so much for your patience with me. On the recommendation of my ortho/hand surgeon, I had a NCS/EMG prescribed for both my arms. It was done by a physiatrist, whom the surgeon trusted, and focused on carpal tunnel/pinched nerve. So not a neurologist. The NCS was normal in both arms. The EMG was normal in the weaker arm and adjacent neck area and the physiatrist saw no reason to do an EMG of the stronger arm.

So, clean NCS/EMG (though a limited one). But also, no signs of carpal tunnel or pinched nerve. Any sense of the value of this kind of EMG for indicating/eliminating ALS? The clinical exam revealed an absent tricep reflex, which worries me. Does anyone know what that could be a symptom of? My hands do seem to have better control and flexibility since starting PT. The anti-inflammatories do help with the twitching. However, that tricep area seems to be getting weaker. I have cramping in my legs; lost 5 pounds in the last couple of weeks; don't have pain, which is rare for a pinched nerve.

My next decision is whether I go ahead with a more comprehensive EMG at an ALS clinic with a neurologist who specializes in the disease and probably sees more examples of other complex neurological diseases.

I keep thinking of my mother's condition where she was misdiagnosed repeatedly. Initial EMGs were limited in scope and hastily done and normal. Doctors took comfort in her sensory symptoms, like numbness and tingling, when in fact those were from separate disorders. They ignored twitching (which appeared in her arms before she had motor issues there) or wrote them off as Vitamin B6 side effects. I understand that the likelihood of two family members having ALS at the same time is virtually nil, but something just feels too similar.
 
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