First timer

[Annakp]

My name is Anna. I was diagnosed with ALS in July of 2020. I got my second opinion in August at U.C. Davis ALS clinic. My left hand has atrophied quite a bit and my left index finger is pretty useless. Other than that, I'm good, albeit low energy and depressed. I also feel, at times, like electronics are reeking havoc on my nerves. It's as if I'm ultra sensitive to electrical waves (or whatever they are lol). I feel very jumpy, twitchy, and sensitive to my environment, if that makes sense. Hoping to get some advice on what to expect and things that may help. I still don't want to believe it though. I'm still thinking "they've" got it wrong.

 

[lgelb]

Sorry to welcome you, Anna.

Hoping they got it wrong is, I think, almost universal at the beginning. Let yourself process and you can begin to prepare. But I will also trot out my favorite cliché: live your life until you can't.

You'll find plenty of "to-do's" here [the search link at the top right can help], one of which in a pandemic should be on everyone's list -- having a Will, health care/financial powers of attorney, and advance directive in place so that your wishes are known.

Jumpiness and environmental sensitivity most often relate to anxiety and lack of refreshing sleep, and restlessness can relate to depression as well. Who wouldn't be depressed about this dx?

If your mood ultimately stands in the way of enjoying what you still have, then we would typically recommend counseling and/or medication at that point. But if you can think of what you want to do this week, this month, this year, and how you can do it, that is powerful stuff.

We'll support you however we can.

Best,
Laurie

 

[TippiLeigh]

Hi Anna! I’m in California as well. I’m fairly new as well and have found a lot of great info using the search feature and when I can’t find an answer, I just ask. I love when people ask questions because it helps me too. So please, ask away!

I get both electrical feelings and jumpy feelings as well. My neurologist told me, at least in my case, that the electrical feelings I was having were most likely the fasciculations. Instead of it being the bigger type twitches (which I also have), it was smaller, less noticeable twitching that felt more like small electrical shocks or vibrations. Kind of hard to describe. And said that my jumpiness was from upper motor neuron damage and spasticity. (So affects both hyperreflexia in the reflexes and being jumpy in general.) My neurologist put my on Baclofen which I feel helped with both of those issues. They’re not gone, but have lessened. I was started on a smaller dose, but they had to double it after a few weeks. So there’s a lot of trial and error in the beginning until the right meds/dosages can be dialed in.

Try to just take it a day at a time. Sometimes I can only take it an hour at a time. So I know how hard that request is. Hang in there! You’ll find some really good people in this community.

 

[lgelb]

Tippi makes a good point that you will want to differentiate between muscle jumpiness for which baclofen or tizanidine is needed to address (they're drugs with a safety tradeoff, so not something to jump into unless you need them), and the more general hyperarousal, a bodywide state, that I was talking about. They can both get better with sleep, though.

You could try to get some rest/do some things that are calming for you (whether prepping or nature walks), and it will be clearer which category you're dealing with.

 

[nona]

I'm sorry to welcome you to our club. The ALS journey is different for everyone and there is always much to learn and share. We are here ffor you.

 

[KimT]

Hi Anna,

Sorry to have to welcome you here but glad you found us.

I have all kinds of "sensations" in my lower legs. Some are fasciculations and others are just nerve irritation. I've become much more hypersensitive to smells, noise, and touch since dx. I do take an antidepressant (Remeron) which helps anxiety and depression and it knocks me out at night. I found that Charlotte's Web (CBD oil) helps a lot with anxiety and it helps me relax at night before drifting off.

Another thing I've tried successfully is meditation and guided imagery. You can tie it to your spiritual beliefs or just meditate or let your mind wander with music in the background.

Please feel free to ask questions. There is no predicting this disease but there are tools that will help with quality of life.

 

[Dee Dee 0617]

Hi Anna, I was diagnosed November 7th, 2016. It started with two fingers on my left hand. I am so sorry you're on this journey, but I am glad you found us. The people here are the best. We may not always have the answers, but we all have developed big shoulders to sustain each other. God bless you.

 

[Jimi]

Nice to meet you Anna. Anxiety and your nervous system being irritated, as others have pointed out, could explain some of your current observations. As things progress you will hopefully find it easier to figure out. Things will always be changing, so try to conquer the problems one at a time as they come. I was diagnosed 2/15. Took me a while to calm myself and find the balance between planning ahead vs not being overwhelmed and make myself miserable. - Jim

 

[lgg]

Dear Anna, Reading your post brought back so many memories. My PALS first noticed something was wrong when his left hand atrophied. He was diagnosed with ALS 15 months later. I second what Laurie said, live your life til you can’t. We had planned to go to Portugal a year after his diagnosis, but decided to go six months earlier. Fabulous trip. Fabulous memories. Those memories help us get through our days with smiles. We even found a golf glove online where he could Velcro the golf club to his left hand. This meant he could play golf for seven months after he had planned to quit. Find what gives you joy and peace and do it now. My heart is with you. Leslie