Is this ALS?

[SupportivePartner]

Hello,

In December of 2016, I got engaged to the love of my life. Just prior to that (around August or September of 2016), he reported that he had a "funny feeling" in his left ring finger, then slowly started having difficulty moving it. In December, he had a nerve conduction study done, and it was determined at that point that he had nerve damage in both arms and hands. He also has muscle atrophy in his left hand, which is visible. Since then, he has lost even more movement in his left hand, as well as muscle mass in his left arm, and is experiencing weakness in his right arm as well. His speech also appears to be slurred, and I notice that he occasionally has twitches in his right arm, left arm, and chest.

Over the course of the last month, he has also experienced 4 falls. 2 on ice (which I initially wasn't as concerned about, as I found it to be slippery as well), however, the third fall was on a flat surface and he said that his knee just gave out. The fourth fall happened earlier today, and he said it was a result of his shoe getting stuck in mud.

He has had 4 MRIs done (elbow, shoulder, neck, and brain), and they all came back clear (no tumors or compressed nerves). He has also been tested for HIV and arthritis, which came back negative. He has been referred to a neurologist at a local University, who he will meet with on March 1st for additional tests.

I am terrified that these are the initial signs and symptoms of ALS. Do these symptoms sound typical of someone in the initial stages of ALS? Are there any other tests I should ask the neurologist to run prior to diagnosis?

Thank you, in advance, for the support.

 

[Atsugi]

A. That doesn't sound at all typical of ALS for lots of reasons. To go from one finger to both arms and legs and also involved speech in just two months is unheard of, in my memory. Plus, ALS is not a disease of "nerve damage in the hand." ALS is a brain disease that destroys certain nerves in the brain, so they cannot tell their corresponding muscles to move. Finally, once a muscle's nerve (in the brain) is destroyed, it never gets better. So if his leg doesn't work one day, it won't work ever again. It's not an off-and-on disease.

B. Your profile says you are a caregiver for someone with ALS. If there is no firm diagnosis, please correct your profile. We in these forums actually rely on that a lot to be accurate. Perhaps you should select "Other."

C. When he sees the neurologist (or any other doctor), it is best if you approach the visit with an open mind, asking "What could be wrong?" instead of "Is this ALS?" If you indicate to the doctor that you have concern over one particular terminal disease, they might waste months running tests to satisfy your question about a terminal disease, instead of letting their medical training guide the investigation efficiently to a proper diagnosis, which I suspect will be a treatable condition.

 

[Firefighter58]

I agree with Mike, nothing more needs to be said.
Al

 

[SupportivePartner]

A. Maybe I wasn't clear enough in my initial post. He clearly has "bilateral neuropathy" which is impacting both arms. That is clear at this point. I'm not sure where you got the impression that I indicated that a leg got better, then worst again, because I don't see any indication of that in what I wrote. From all that I have read about the initial symptoms of ALS, he meets most of the criteria, which is concerning, so I came to this forum for support. That said, I felt a condescending tone to your response, which is probably not helpful to most people going through this process.

B. This correction has been made. I now recognize the sensitivity that you might have to this.

C. Thanks.

 

[thecat2017]

That said, I felt a condescending tone to your response, which is probably not helpful to most people going through this process.

When I pointed that out, he just made the whole thread disappeared. I got a private message which I could't reply to. Needless to say, making a diagnosis of ALS (or reject it outright without looking at all the medical records) over the internet is a bit rich, isn't it?

Reading these post really makes me sad. In the hindsight, my mom experienced almost all symptoms without a proper diagnosis until the day she was admitted to ICU due to her weakened diaphragm. She was trached, then passed away 2 months later due to blood sepsis. Mom's symptoms were exactly like what many described. They occurred at different stages, and were confused with her many other existing medical conditions.

By the way, you can delete my post now. I am out, for good.

 

[SupportivePartner]

I'm so sorry to hear about your loss, thecat2017, and I'm sorry you were bullied online. People deal with loss differently- some in a more contained and adaptive way than others. My heart goes out to you. If you need to connect privately, let me know.

 

[Nikki J]

Do you have more information about the ncs findings? In general an abnormal ncs points to something other than ALS. The problems in ALS are seen in an EMG ( which I gather he has not had yet?) and the NCS findings are normal

Without the NCS issue looking only at symptoms they could possibly be ALS but also other things. If the NCS is not a red herring ( two problems occurring simultaneously which is not completely impossible) then something else becomes more likely.

I expect at the appointment based on his clinical exam they might order more blood tests and an EMG which will give you lots more information and I hope a treatable answer. I encourage you to look at the sticky on getting a diagnosis to help prepare to get the most from your appointment. Good luck with it

 

[SupportivePartner]

Nikki- You are correct- he has not had an EMG done yet. That is scheduled on March 1st. Your response was very helpful.

 

[lgelb]

Congratulations on your engagement, SP. Whatever happens, you are fortunate to have found each other.

There is precedent for this pattern of progression, so I would not reject the possibility of ALS out of hand. But, as Nikki points out, an abnormal NCS most often signifies something else. Meanwhile, he is clearly at risk for falls, so reducing that risk could entail something like a rolling cane or rollator. Check in any time, and please let us know how the EMG goes.

Best,
Laurie

 

[skipper66]

I'm not as knowledgeable about ALS as Laurie and the others so I won't comment too much medically. However, please take precautions as Laurie pointed out about falls. No matter what it is you want your partner as safe as possible. Wishing you the best of luck. Keep us posted on what you find out.

 

[SupportivePartner]

Nikki- unfortunately I don't have more information about the NCS other than the results were determined to be "inconclusive," however there is clear muscle atrophy in the left hand and bilateral neuropathy.

Laurie- thank you. I will definitely keep you posted after the EMG appointment. I am trying my best to get him to slow down, but he is insistent on continuing to work so that he could feel productive. I've encouraged him to not carry heavy objects and to be cautious.

Kim- I'll be sure to keep you all posted. Thank you.

 

[SupportivePartner]

Hi everyone,

I wanted to give you all an update and also ask for some feedback about falls, if possible. My fiancé has continued to have all of the symptoms I previously reported, and he had another fall this past week. When I asked him how the fall happened, he said that his left knee gave out and he "crumbled down." His right foot stayed planted as he fell, so he injured it as he twisted it coming down, and it is now swollen. Does this sound typical of the falls that people who are diagnosed with ALS initially have?

He also seems to be having more muscle twitches, which did exist before. We're still waiting on our next appointment with a neuromuscular specialist, which is in a week and a half, so I will keep you all posted.

Thank you.

 

[SupportivePartner]

One more question: Are any of you familiar with Chronic Inflammatory Demyelinating Polyradiculoneuropathy? It seems as though the symptoms are similar to ALS, however, the prognosis seems to be a bit different. Do any of you happen to know if there are any symptoms that are present in ALS that may not be present in the alternative diagnosis?