Is this the beginning of ALS?

[Jessie10]

Initially had bottom lip twitching that started after Christmas. The twitching would be consistent for a day or two and then disappear for a week and then come back again. Then I started having tingling all over my body, including the face. The tingling was not all over my body at once but moved around on both sides. Went to my PCP for both and she did blood work and all my labs were fine. She has referred me to a Neurologist but have not received a call yet to schedule. Over the last week the tingling has changed to muscle twitches in both my calves. I still have tingling and some twitching in my face.l and cheeks. Also had a 24 hour period of lip twitching a day or so ago. It’s still twitches here and there and feel some tingling in cheeks and lips throughout the day too. Can this twitching and tingling progress to include more classic bulbar symptoms? The fact that the tingling in my legs has changed to muscle twitching, should that be a concern?

 

[ShiftKicker]

Hello there-

Please make sure to read here: Read Before Posting as it covers why twitching absent clinical weakness does not create concern for ALS. Twitching is as general and common as coughing and could point to many many things, or really nothing at all. Additionally, you mention tingling, which is a sensory symptoms and would point to some other issue.

 

[Jessie10]

Hello, thanks for your response. I apologize, I thought, I read all the "Read before you Post" links.The link was extremely helpful and could have saved me hours of internet searching. Based on that information I do just have a few clarification questions. When it says ALS is = failure. So, in all instances with clinical weakness it’s one day I can use this muscle and the next day I cannot? It’s never a slow decline? In the example it’s not I can run 3, now only 2 and now 0? The additional link about EMG’s and atrophy made it sound like it was gradual to clinical weakness. With regards to the twitching, it says it’s seldom a first symptom, in the rare case that it is, is the twitching going to be just one sided on initial onset? Based on my symptoms I have it in both calves. I know this site is for the people who have this disease and for their caretakers, but I just wanted to add a thank you and appreciation because it's really hard to siphon through all the Al information on the internet. This disease is rare and even PCP doctors do not know enough to really put people minds at ease.

 

[lgelb]

You are correct that beginning with bilateral twitching is a strong argument against ALS. Nor is it typical that you'd go from tingling to twitching.

As to failure, failure is failure. Like, there's something you can't do.

I see no reason to worry about ALS.

 

[Jessie10]

Thanks for your response. I get that failure part but is the weakness to this failure a slow decline? Also is it possible that my lip twitching would progress to include slurred speech ? Or you saying that since it started with slurred speech it’s not likely. Thanks again

 

[lgelb]

What I mean by failure is one day my husband couldn't get up from the tub. He had no prior warning of this. It wasn't that he gradually felt that he wasn't going to be able to one day.

I have never heard of lip twitching becoming slurred speech.

 

[Jessie10]

SO sorry to hear about your husband. I thought I was done with my questions but unfortunately I found out today that my Neuro appt is not until 05/22 and the EMG that my PCP ordered actually has to go through the Neuro so the best case scenario maybe June for my EMG. My PCP did tell me to call each week to hopefully find a cancellation.
I know the website says twitching without weakness is not a concern for ALS and it’s very rare for this to be the first onset symptom. However it does say it can occur. I am currently having twitches in both legs, more in my right than the left. The right is my calf and thigh and the left more on my calf. I also got a camp this morning in my right calf. My question is, in the rare occurrence that the twitches and cramps come before the weakness what is the average time frame until the weakness starts? Also is it possible to off onset in both legs?

 

[Jessie10]

Hello, while I am waiting for my neurological appointment I wanted to circle back since my symptoms have changed bit and wanted a better understanding. Thanks for taking the time to read, appreciate information.

Currently I have twitching in both calves that I cannot see, sometimes it feels like a twitch other times feels like a vibration. My calves are tight and feel often close to cramping but I am constantly stretching when I feel this common on. I have had one cramp on my right calf. My feet can be a bit sore all of a sudden with twitching and vibration there too. I know that based on the information provided that twitching without weakness is not ALS. However, I think the confusion for me and maybe others is if muscle twitching, tightness and cramps are symptoms in ALS why are they not considered a precursor or warning sign that the weakness will follow?

Is it possible that these are initial symptoms and weakness will follow?

I know in the majority or cases it’s weakness but is it always weakness first?

In the rare instances that the twitching, tightness and cramps come first ( if possible) how quickly should the weakness follow?

I have read in a few places that doctors usually give it six months. Is this a real thing?

Also my symptoms are happening in both my calves at the same time, is that possible with the onset of ALS?

Thank you and appreciate your time, just worried since I do see these symptoms listed with people with ALS.

 

[Jessie10]

Hello, I wanted to follow up on my question, please ignore any previous questions. Thanks for taking the time to read and respond to this question, my worries are getting the best of me and my neuro appt is not until Mid May.

Currently I have twitching in both calves that I cannot see, sometimes it feels like a twitch other times feels like a vibration. It happens in different areas on both calves. Sometimes it’s above the ankle, other times in the inside calf muscle and others areas. They are very slight or small but seem to be causing some pain and a lot of tightness.

This tightness makes them feel often close to cramping but I am constantly stretching when I feel this common on. I have had one cramp on my right calf. I sleep with a heated blanket around my calves at night to hopefully keep from cramping.

My feet can be a bit sore all of a sudden with twitching and vibration there too, also my ankles recently sometimes feel sore.

Does this seem like onset symptoms of ALS? I currently do not see any clinic weakness but is it possible that these are initial symptoms and weakness will follow?

Thank you and appreciate your time, just worried.

 

[Jessie10]

Hello, is there an issue with this thread? Can this be seen? Just odd nobody has responded to my last few questions. I know there is no obligation but seems like someone always does respond.

 

[ShiftKicker]

No issue with the thread. Sometimes when questions are similar to so many others that have already been answered in other threads and in the "Read Before" link, they sometimes get overlooked. However, looking over your posts, it does appear that you have already been answered to the best of this forum's ability and your upcoming neuro appointment will be a better place to get the answers you require- straight from the horse's mouth and by someone who is able to examine you and give more informed answers.

You keep asking if things look like the onset of ALS, so I would direct you again to the pinned link for reassurance and to repeat the most important thing when fear of ALS rears its head- twitching absent clinical weakness plus sensory issues points towards something else.

 

[Jessie10]

Thank you for your time

 

[Jessie10]

Hello,
I was hoping to get someone’s opinion/advise.

Just last week I had an EMG/NCS done by the neuromuscular doctor who runs the ALS clinic where I live.

At the time my symptoms were/are 24/7 switching in both my calves all over, tight and sore calves that has caused feet pain. This has been going on for two months. Feet part is about a month.

Also lip twitching that is pretty constant and then random twitches throughout my body that just come and go. Face, butt, thighs, shoulders, stomach etc…

He tested both my legs and everything was fine. I told him about my other twitching and especially my face twitching and he did not seem concerned in the least. He said he had never seen a case where weakness started in the face. Also I had him look at my tongue and he did briefly and was like tongues can twitch. So again not concerned. All good things.

I did think it was odd that he did not do a thorough neurological exam on me. He checked some reflexes in my legs and arms and that was it. He asked if I noticed weakness and I said no. I assume if there was weakness in the legs the EMG would have showed something.

So he said I can make another appointment now and cancel if I want or just message him if things got worse. I made an appointment.

I left thinking pretty positive things, the lack of exam worried me but told myself he has seen it all, so maybe he can just tell?

However, as things tend to go this week out of nowhere I started having consistent twitching on my shoulders, back (below my shoulder blade) and biceps/triceps and stomach. Both sides but way more on left and the most consistent spot is my back and shoulders. Proximal muscles, scary.

1. Would AlS twitching move to a new location in shoulders and back before causing weakness in the first area, the calves?
2. Even though this new twitching is more consistent and focal and in the proximal muscles can it still be BFS?
3. Would you just wait it out until you actually have clinic weakness? I would not want to go back after just a week. I have had twitching and other things in my calves for two months and nothing showed so assume that would be the same for this new twitching.
4. Do u think it’s odd he did not do a full neurological exam?

Thanks for you time

 

[lgelb]

No, yes, yes, no.