Old 11-10-2017, 01:44 AM #1 (permalink)
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Default Possible ALS "symptoms make a good case for it"

Hi,

I've had lots of neuro symptoms for years now, but the past year have been the first time I've actually had a neurologist that has seen some UMN and LMN signs. I've had fasiculations in my lower legs, I get parasthesias, I've had some trippings at times, I get tiredness in my legs at times. Lately I've also had cramping and spasms. as well as some spasticity.
Cramping and spasms, now not only occur in my legs, but in my arms and also my ribs. The last time I saw my neuro, she said that I'm worrisome, that I make a good case for ALS, but that my strength is always good (that I sometime am a 3, but then she'll test again and I pop right back to a 5, so she's not overly concerned at this point - this was 3 weeks ago) and my last tests were all negative (EMG back in January, head MRI back in Aug 16 and cervical MRI back in Oct 16). She did see a bit of atrophy in my left hand last time, which was 3 weeks ago. On my EMG, the doc that did that said I had carpal tunnel. I get severe nerve pain in my entire hand and up my arm to my elbow, much worse than I ever did before with my right hand (and I'm right handed and have had a repair in that hand). I also now am starting to get numbness again in my right hand.
I've also had some swallowing issues.
NOW, I have significant atrophy in both hands and I'm noticing it in my wrists as well. The atrophy has gotten bad just since I saw my doc three weeks ago. I've taken pictures of it to document.
I'm getting more tingling and stuff in my legs. I've also had on and on weakness going up stairs, carrying things etc. 20 pounds of kitty litter now seems like 40 or more to me.
I know I need to email her to tell her the latest.
I am a speech-language pathologist, so this has been in the back of my head now for the past year, even before she even mentioned it, as I know UMN and LMN signs. I've had my arms get tired just shampooing my hair or stirring things when making dinner and I've ignored it. My legs would get tired at times walking my dog and I'd ignore it going up a flight of stairs. I've fallen at the top of the stairs, going up the stairs 3 times (she knows about this).
I guess, the atrophy in both hands now is about the tale tale signs now. I think I'm also starting to see fasiculations in my tongue now as well as the swallowing stuff.
I know docs don't like to diagnose someone with something as serious and awful as ALS, so are hesitant and I know I will need a second opinon if I do get one.
Here is the thing, I hate being in limbo. I want to be able to plan my life and do things while I still can and not waste time. You know? I'm preaching to the choir. I know all of you know that have it.
Anyhow, I know that this disease is variable, it's different for everyone. I know onset is different, it progresses differently. I've worked with neurogenic disorders for the past 23 years, including patients with ALS.
Thoughts? Advice on next steps?
Should I email her tomorrow to tell her about the atrophy and email her pictures and tell her about the increased weakness or just wait a little longer and see what happens.
Thanks in advance.

Last edited by LinK : 11-10-2017 at 01:51 AM
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Old 11-10-2017, 01:55 AM #2 (permalink)
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Default Re: Possible ALS "symptoms make a good case for it"

Did I miss something about the results of an EMG?

It is hard to believe you've had significant new and bilateral atrophy since the neuro saw "a bit" 3 wks ago. That would not say ALS, nor would generalized symptoms for "years."

Personally, I would be staggering if I were toting 20lb of kitty litter, so your strength (the ultimate failure in MND) sounds pretty good.

Our experience is that the vast majority of descriptions like yours come to nothing, but the bigger issue is what exactly you are doing to get out of the limbo that you report. What did your neuro say are next steps, if any? If you think your neuro is temporizing, why not find another? Has systemic disease been ruled out by an internist? What are you doing to palliate your symptoms? Do you need another hand surgery consult? How are you living life apart from thinking about limbo?

My advice would be to think long and hard about the answers to these questions.

Best,
Laurie
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Old 11-10-2017, 01:58 AM #3 (permalink)
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Default Re: Possible ALS "symptoms make a good case for it"

Lots of sensory complaints, and everything seems to be on-and-off. Your descriptions of weakness are not ALS-like.

Continue the investigation, but don't jump to conclusions. Most likely, this is something else completely.
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Old 11-10-2017, 04:28 PM #4 (permalink)
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Default Re: Possible ALS "symptoms make a good case for it"

Being you're a speech-language pathologist and you've worked with neurogenic disorders for the past 23 years, including patients with ALS leaves me short on your post concerning so many symptoms that point away from ALS.

What did the summary/conclusion of your EMG say?

You wrote...

"The last time I saw my neuro, she said that I'm worrisome, that I make a good case for ALS, but that my strength is always good (that I sometime am a 3, but then she'll test again and I pop right back to a 5, so she's not overly concerned at this point - this was 3 weeks ago."

Try not to be worrisome concerning ALS.

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Old 11-10-2017, 06:47 PM #5 (permalink)
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Default Re: Possible ALS "symptoms make a good case for it"

In ALS strength doesn't come and go. In some cases it gradually weakens but it keeps going down. In other cases, things just stop working.

"making a good case for ALS" would prompt me to find another neuro and find out what is really wrong. Something coming and going could be autoimmune and I would surely pursue the carpel tunnel. That can be fixed, as I'm sure you know.
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