Scared and confused

[lkc1981]

Hi everyone Thanks in advance for taking the time to read and give any insight you might have. It's truly, truly appreciated.

I am experiencing some symptoms that have me scared about ALS. Prior to the ALS concern, I have been seeing a neurologist with a suspicion of Lyme disease (and have even tested positive for two specific Lyme bands). However, the neurologist is not convinced that this is Lyme yet. I tried to get in to see him this week but he is on vacation. I go on vacation next week, so will be at least two weeks before I can see him and I'm getting very scared.

For the past 8 days, my muscles (everywhere, but worst in my calves and feet) have been twitching non-stop all day. By all day, I really mean it. I usually don't go longer than a minute without a bout of fasciculations. I can see the visible fasciculations when this happens.

Over the past six months I've had other symptoms; feeling like my tongue is swollen (no sign that it's actually swollen, but it feels slow and sometimes effects my speech, at least to me), increased uncoordination, lack of balance, feeling of weak muscles (although I haven't been able to see true clinical weakness), shaky hands (especially when holding something like a water pitcher), cramping in my hand muscles when I hold a water pitcher/pan etc. I don't necessarily know what spasticity feels like, or presents as, but there are many times that I feel my muscles 'tighten up' throughout the day (mainly my fingers, which tend to curl up slightly when I'm sitting and at rest...one day my index finger curled all the way up violently as I was writing). On top of the twitching, I've also had muscle 'jerks' (a finger will randomly lift up etc) and especially when I'm sleeping (sometimes these are pretty intense and move my whole body).

For the record, I'm 34 years old.

Here are my questions:

1) I've read many places that ALS does not start with fasciculations, but I've also read many other first hand stories of people who had fasciculations as their first symptom. Can anyone shed light on whether I should be concerned over the constant fasciculations I'm having?

2) Does the frequency and consistency of fasciculations mean anything? I'm having them almost 24/7.

3) I've also read that I really need to be experiencing clinical weakness before being concerned. Then again, I've read many first hand stories of people with ALS who had fasciculations and other symptoms before having clinical weakness. Any insight here?

4) The feeling of tongue swelling/uncoordination has been going on and off for about 6 months, but seems to be back on a daily basis now that these fasciculations have started. Would this make sense as being the first presenting symptom with ALS?

Again, thank you for your time.

 

[lgelb]

Hi, L,
I don't see ALS in your picture, but would recommend if Lyme is on the table that you see an infectious disease specialist, who sees more Lyme than most neuros.

Best,
Laurie

 

[affected]

To answer your questions specifically:

1. Twitching on its own means nothing, and comparing twitching to others means less.

2. Yes it does - body wide twitching is almost definitely not going to be ALS.

3. Clinical weakness is the hallmark. Regardless of whether there was any twitching first or not. To put in perspective nearly everyone who experiences twitching never develop ALS.

4. ALS symptoms do not come and go. Your description with your tongue sounds nothing like ALS regardless of it coming and going (my husband died of bulbar onset).

Please read the post titled READ BEFORE POSTING at the top of this forum section. That is our official position. You are better off not reading about ALS as it will heighten your fears and make you 'think' you are getting more symptoms. If you do go reading more about ALS and it differs from that sticky post, please don't ask us to clarify and go over it, just go read the post again.

All the best, 2 weeks is not really that long to wait and hopefully your neuro can put your mind at rest.