Neuro visit

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karenmary

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Hi there,
I am new to these forums. I have been following all of you amazing people for a while. I am 35, visiting my second neuro in July, to hopefully rule out als (so I'll spare a long post about my symptoms and "atrophy" pictures.) ;) In the meantime though, I've just been learning about it and thinking, often, of you all.

One of the questions I've had that I've never seen asked before - and it may seem like a silly question (I'm sorry if it is!) - is when does an ALS patient find they can no longer hum songs? Music seems to be so uplifting - listening to it but also being able to sing/hum along. I just wonder when you all have found this to be too difficult? Was it after losing the ability to speak, or did it mostly coincide with that process?

Prayers for you all.
-Karen
 

Atsugi

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Hi Karen,

For really good reasons, we ask that persons who are not diagnosed with ALS restrict their threads to the Do I Have ALS sub forum, and only post in their own thread.
 

karenmary

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Nuero visit today- i'm nervous

Hi all,
First of all, thank you to everyone who moderates these forums and to all the amazing people answering all of our questions.

I had a neuro appt scheduled for July 3 with symptoms including fasiculations, hyperreflxia (all limbs but not jaw) and some right leg weakness (not clinical). My neuro called today with a cancellation, which I quickly took. Unfortunately I left worried...

My symptoms actually go back to 2016. I had fasiculations then, as well as some sensory issues (which I know point away from ALS). My neuro did an MRI then, found nothing, and said the fasiculations were benign. "Don't worry about it." So I stopped worrying about it. Eventually they went away (or I just stopped noticing them.)

Fast forward to February 2018. The fasiculations returned - all over my body (literally every single part - including upper lip, tongue, abdomen.) I ignored them (thinking of my neuro's prior opinion.) About a month or two later, I started to notice a bit of a gait change. I'd roll to the outer edge of my foot on occasion while walking, a bit unbalanced, and sometimes veer a bit to the right. I chalked this up to my hip - I am 35 years old with arthritic hips (osteoarthritis, both sides) and assumed over the past year I've started to subconsciously change my gait to accommodate the arthritis (and the weakness that, honestly, MUST be present in my hip.) But on occassion it feels like the weakness is in my right calf annnd my hip (which I also chalk up to a bad back and maybe some sciatica that presents as weakness.)

This past month, the fasiculations appeared in my tongue and that was it - I made an appt. Since appearing in my tongue, I've unfortunately been paying attention to my speech and feel like I'm stuttering.

Today, at my neuro, he said the following:
-widespread fasics are generally more often pathological (he said focal fasics are almost always benign). He said ALS "often presents with bodywide fasics first" (which is opposite of what I've read...)
-that I was hyprereflexive on both sides in every area (though he also said many young women were hyprereflexive and my whole body was also super hyperreflexive in Aug, 2016)
-he said he saw no clinical weakness (he did all the strength tests) but since I mentioned the gait change and veering gait, that he can't rule out ALS. I completely forgot to even mention that I thought* I was having speech issues.
-he did also say if he was to make a bet on whether I had ALS, he'd make a "sizeable bet" that I didn't, bc of my strength...but still he can't rule it out because, "well, ALS has to start somewhere."

I have an emg scheduled for July 25. A long time to wait. What are your thoughts? I have twin 4 year old girls...I'm pretty nervous. This doesn't sound like a typical presentation of ALS, but I guess there rarely is a "typical" presentation. For instance, i carried both of my girls down the three flights of stairs after the appt (they are both 43 pounds)...but wonder if someone had a more bulbar onset, could it present like this? (I know that's pretty rare, especially in younger folks...)

All I can do is think of my girlies... <3

Thanks in advance for your time.
Sincerely,
Karen
 

karenmary

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OH gosh, I am so sorry. I will be sure to keep my comments and questions to this section. I only just noticed your response (after I attempted to post a question in this forum here.) I apologize for the "duplicate thread." I did read those rules but didn't realize my original post had been moved here. I'm sorry!!
 

Atsugi

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Re: Nuero visit today- i'm nervous

Karen, I don't see any reason to worry about ALS. Esp bulbar.

Lots--most--doctors are VERY chicken. They won't rule out anything until they have a definitive diagnosis of something else. Even then, they often hedge. Remember, doctors are not only speaking to their patient, they are also speaking to your potential future lawyer and the insurance companies.

Keep the EMG appointment. But in the meantime, I would see another neuro to calm your mind. Be sure that this second neuro is a real, no-kidding ALS expert associated with an actual ALS clinic.

(Thanks for ending your post with a sentence set off by itself--calling my attention to it: "Thinking of my girlies." That got my attention. Then I read up and saw you were referring to actual children. :) )
 

ShiftKicker

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Mod note- combining threads to keep everything in one place. Karen, please just keep on posting in this one. That makes it easier for members here to see the whole picture.
 

karenmary

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Atsugi, Oh my goodness, your comment just made me laugh out loud! Lol. :p Thank you for that!! That's the first time I've really busted out laughing since the neuro appt today! :)

Thank you so much for your time and comments. I can't tell you how reassuring that is and helpful to hear. I will take your advice and do some research for a second neuro tomorrow. I will keep the EMG...though the thought of it makes me so nervous.

Thank you all. And I will be sure to keep my comments and questions in this thread!
 

lgelb

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Karen,

Though you did not mention your perception of your speech, while the neuro was listening to your speech, he would have noticed if you were speaking abnormally.

And if you can carry two 43-pound girls down 3 flights of stairs, I think we can rule out significant clinical weakness.

Like Mike, I don't see ALS in your story. Osteoarthritis in both hips is fairly unusual at your age; you might consider seeing a rheumatologist to rule out those types of diseases, if you haven't. I also disagree with your neuro -- body-wide fascics are not any more suspicious, all else being equal, than localized ones.

As he noted, your hyperreflexia is at least a couple of years in, so we can't consider it a new symptom. From your account, no one else has commented on your speech (well, that is my inference) or gait. Those are all good things that point away from ALS.

It's 6 weeks to the EMG, but in the meantime, I'd see a podiatrist about your gait (you may need orthotics or other support; at the least, s/he can establish a baseline for you), think about rheumatology, get a massage, sit in a hot tub, drink a fruit smoothie [tongue stuff can relate to dryness, stress, dehydration] and enjoy your girls. I'm not being flip -- just that there are a lot of good directions to go and I truly do not think the road ahead is dark.

Best,
Laurie
 

karenmary

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Thank you so much for your response, Laurie. I so appreciate you taking the time to answer my questions and concerns. <3

I hope you're right. Thank you so much. I will take a deep breath and try to relax in these next few(ish) weeks. Yes, no one has noticed any slurring, and you're right - when I'm hydrated I notice it much less often. As for my arthritis - my docs truly believe it is wear-and-tear (I was a college track athlete with undiagnosed hip dysplasia.) I honestly sometimes wish it was autoimmune so I could at least blame some of these symptoms on something else....

My neuro did offer some anti-anxiety drugs to "treat the fasiculations." They are benzos, so I said that I did not want them. But it made me wonder - wouldn't benzos only work if the fasiculations were caused by anxiety? Do they help quiet fasics if a person is diagnosed with ALS? I guess I'm going back and forth trying to decide whether anti-anxiety meds would be helpful or (as I tend to think) more trouble initially than they are worth.

Thanks again to you all.
 

KarenNWendyn

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Wouldn’t benzos only work if the fasiculations were caused by anxiety? Do they help quiet fasics if a person is diagnosed with ALS?
People with chronic fasciculations generally learn to ignore them, independent of the underlying cause of the fasciculations.

Benzodiazepines decrease any anxiety associated with experiencing fasciculations so that the person can ignore them and feel calm about them. I don’t think the meds actually stop the fasciculations.

Regarding your initial question about when ability to hum songs stops, that would depend on an individual’s course of the ALS, which differs markedly from person to person .

For example, someone with bulbar onset ALS would probably lose their voice long before someone with onset in their legs. Someone with rapid disease progression will lose their voice much more quickly than someone with slow progression. Once the muscles controlling the vocal chords become nonfunctional, then the ability to hum would be lost.
 

karenmary

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Karen,
Thank you so much for your response. That makes sense. In the back of my mind I was hopeful that - if they helped the fasics go away - that I'd be more reassured that this isn't als. Alas. That'd be too easy ;)

And thank you for answering my question about singing and humming. I asked bc I sing to my girls all the time...I was sad to imagine a time when PALS lose that ability. <3

I tried to stay off the forum over the weekend, but gosh the anxiety is tough. One question I didn't ask - would it be possible for fasics to go away and then come back if it were ALS? I had bodywide fasics in 2016, they did eventually go away, and now back. I'm sure some ALS symptoms come and go (?)...I wondered fasiculations were one of them...?

Thank you again for your time. <3
 

Atsugi

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Karenmary,

Or maybe Karen? Or Mary?

(Please, PICK one!) :)

Hey, again, Karenmary.

I think you're missing the overall gist of our responses. We don't see any reason for you to worry about ALS.
People twitch. Healthy people twitch. Twitching is so common to so many conditions that it is not diagnostic of anything.

Here's a guide: ALS doesn't get better, it just gets worse.

(I don't use the fancy medical word because there are different kinds of twitches, and I can't see yours, so let's just call them by the generic term, twitches.)

When Kris noticed a twitch, it meant a nerve going from the brain to the muscle was trying to survive. After a few days of that twitch, it would go away, and that muscle would also stop working. Paralyzed. So whenever Kris saw a twitch, we knew that muscle was about to go, in about a week.

When Mike had a twitch, it was just entertaining. Twitch eyelid. Twitch biceps. Twitch cheek. "Hey look at that." It was just amusing to watch parts of Mike's body bouncing around on their own. Maybe it meant Mike needed a particular mineral in his diet. Who knows?

Mike is still with us. Kris is not. Twitching is not really very diagnostic.
 

karenmary

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Mike,
Thank you so much for your response. And I'm so sorry about Kris.

As for my name, first name - Karen. Middle name - Mary. My friends call me Karen (unless I'm in trouble, and then they call me "KARENMARY!"). My dad calls me KarenMary, whether I'm in trouble or not. ;) I respond to them all. :)

And thank you again for your comments. Your comments really bring me down a peg. I really, really appreciate it!
 
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