Loss of muscle tone & twitching

[Nikki J]

I suggest you see your pcp to see whether you do have atrophy s/he can test strength and reflexes too.

Sn EMG such as you describe should have picked up arm issues.

You are describing all over perceived atrophy without loss of strength. This is counter to the way I , my family and others I know have experienced things.

Twitching is utterly non specific. I don’t know what is wrong with you but it doesn’t seem like ALS to me. None of us can see you so go to your pcp who can certainly tell you what they see

 

[Lostandalone]

One other thing I wanted to add and see if this would be weakness. The left forearm that I have had significant atrophy in over the past several years.....when lifting my arms straight over my head I am only able to hold it up for a brief period before it starts to ache and tire. This does not happen with the other arm. Would this be an indication of weakness or lack of muscles working? Like I said the muscle is very atrophied and arm very skinny.

 

[ShiftKicker]

Go see a doctor and get a full exam. I do not think you will be reassured here, despite the many people who have responded to you and who are very experienced. Sitting on this forum, as you have been all day, nets you nothing except anxiety. Please seek proper medical care in person.

As others have pointed out, you are likely not looking at atrophy- this is something that is incredibly obvious to a doctor. Being smaller on one side or having looser skin does not mean atrophy. Nor does feeling weak mean you have atrophy.

 

[Lostandalone]

Hello......I just wanted to provide a follow up to what has continued to occur over the course of the past couple weeks since I first posted. I am having progressing symptoms to include the following:

-fasciculations that have expanded. They are throughout my body to include lower legs, calves, feet, thighs, abdominal, arms, front of neck,eye, and now in the last day my lip and chin. These are happening more and more frequently.

-Strong involuntary jerks of leg or arm

-beginning of muscle cramping. will have an ache in area of arm or leg for no apparent reason. My toes ache especially in the foot with the most twitching.

-Had slight tremor or shaking in thumb when trying to use phone.

-lower lip quivers

-drinking.....this is something that is becoming very concerning. Water or liquid doesn't seem to all go down and feeling of sitting in top of throat. If I take a drink and it goes down I have to swallow another time just to get what remains down. At least that is the feeling. Drank last night and went down wind pipe and burned.

Food.....have to chew food more. Food doesn't seem to all go down. I can cough after eating and a piece of my food comes back up.

Speech - several instances where I slurred or messed up in speaking. Noticed by my son as well.

Weakness - my left arm and hand seem like they are weakening more and more.

Atrophy - hands look like an 80 year old woman. Arms quickly shrinking. I feel like I am quickly wasting away in front of my eyes

Weight - Eating, eating and eating. Can't put any weight on and seem to keep loosing. Wondering if atrophy and loosing muscle is causing this.

This all seems to be further presenting over the past couple weeks. Could ALS really proceed so quickly? I am walking and functioning and I know that the "not able to move" is the key here, but it has to progress to that. Just want to know if this is typical.

I had a lower body EMG the other day which showed denervation on the lower Right paraspinal at L3/4 and L5/s1. I am very concerned about this. Doctor said could be caused by radiculopathy but I have no leg pain or radicular symptoms.

I was seen at Mayo Clinic today and she said clinical exam was good. It seems clinical weakness is so limited. Like it has to be that you can't lift anything or walk. But she is ordering their own EMG and swallow study to be done next Wednesday.

I am scared and so frightened. I just have myself here and no one to help me here. I'm having a terrible time managing and am looking for some insight if anyone has anything further.

Can things come on so quickly? Can the fasciculations present so much so fast? Can I have muscle wasting without clinical weakness? Just a few questions.

I pray every day for strength and just want the opportunity to move forward and give back to others. Any help appreciated!

 

[codyclan]

You hit the nail on the head, clinical weakness is absolutely different from feeling weak. Clinical weakness is the hallmark of ALS and, no, feeling weak is not a precursor to clinical weakness. My husband never ‘felt weak’ even when he was paralyzed. It seems counterintuitive , I know, but ALS isn’t a muscle disease, it’s a brain disease. The nerve that tells the muscle to move, no longer sends the signal, so that muscle doesn’t respond. It doesn’t feel weak, it just doesn’t respond.

What did your neuro say was his differential diagnosis? What did doc say about the atrophy? I understand your concern, but it still doesn’t sound like ALS. Keep working with your doc.
Tracy

 

[KimT]

Kim,

I'm glad you're going to Mayo Clinic. They are very thorough and they use the team approach to health care. If your neuro thinks you need to see another specialty, they will refer and set you up. They will figure out what's going on and treat you. If your clinical exam was good, that is a very good sign.

I live in Daytona Beach Shores. I lived alone and I now live with a housemate who bought a large condo with me. He isn't my caregiver but he helps with expenses, my dog, etc.

Please keep us posted and let us know what Mayo says.

I'll be back up there later this month because I also see an ENT up there. It's a long drive but definitely worth it.

I know how scary things can be and being alone makes everything worse. Just know that you're in good hands.

 

[Lostandalone]

Hi Codyclan.....The doctor didn't seem to take much notice into my muscles. I am a trim and been a very fit person. I have unfortunately been going through a lymphoma workup over the past 6 months as well having had 4 biopsies. Been a very tough half year for me. So I have not been on my regular exercise regimen. She was more into the weakness exam. I was seen in the ER at Mayo and that doctor took immediate notice in my hands before I even pointed it out. I showed him legs and arms and he noted apparent atrophy. This visit got me into the Mayo which is very hard to get into as you know. My brain MRI was normal and not much on my cervical,thoracic, or lumbar MRI's that pointed to much. My NCV from outside neuro were normal. This is what has me very concerned that my symptoms could be pointing to ALS. That's why I asked if things can present so quickly as well. Like the fasciculations, can they over the course of two weeks become so widespread and constant? Is that indicative of how it works with this disease? And would I have muscle wasting before clinical weakness? Also, the facial numb type sensation that has been with me since March as well as my hands/fingers. My right toes just started last week. I know this isn't a disease of the sensory, however read so much that those with ALS have this numbness sensations appear.

And Kim.....we are close by. I am in Lake Mary so almost neighbors. Maybe a trip to the beach would actually help me. Must be really nice to be able to look at that view and relax. Glad you have someone living with you and that is there to help you out some. Thanks for taking that time to reach out and respond to me!

 

[Lostandalone]

Tracy would you be open to share further on the weakness piece. I am no longer able to open a jar or even my grapefruit juice bottle with my left hand. Wouldn’t that precede complete paralysis? Or does muscle work as it always has and then one day just doesn’t move?

I am so fearful now. The strong fasciculations are growing at an alarming rate. All,over. 100’s at a time. This is happening over a short couple week course. Is that seen in ALS? I have one child 22 that just graduated from University of Florida last month. It’s suppose to a happy time and we are liv8ng in daily fear. Need help understanding.

 

[Nikki J]

You are correct that noticeable paralysis is not generally the initial sign of weakness. Muscles fail one by one so others compensate in the beginning. Inability to open a jar or button a shirt can be a first sign of weakness in ALS but also happens for many different reasons

What did the neurologist tell you? You stated your clinical exam was good. Does this mean she saw no weakness atrophy or abnormal reflexes? What did she think might be the problem? Your tests are a week away so you should get information soon

 

[ShiftKicker]

Lost-

I am interested to note your statement about Lymphoma. Have you been assessed for Paraneoplastic syndrome? As many others here have stated, your symptoms do not match the ALS constellation of symptoms. However, there are many other reasons for twitching, weakness and sensation type symptoms.

If these symptoms are as urgent as you are indicating, a very specific disease forum is not the place for you. However knowledgeable and well meaning the people here are, you will not be able to get the care you need from strangers on the internet. You MUST see a doctor to properly hunt down the genesis of your health concerns. You can tell folks here about your subjective experience with things like weakness, but only doctors and health professionals can actually provide the care you need.

Best wishes with your upcoming doctor's appt.

 

[Lostandalone]

Nikki.... clinical weakness was not found. However they put like one pound of resisrence when checking. Not like opening a jar. It just makes me feel like I have to not be able to move before clinical weaknesses is determined. The doctor I saw was a neuro oncologist. Not a neuromuscular doctor. So has me wondering. Not much assessment in atrophy.

The fasciculations are widespread and that has occurred over a short couple weeks. There are hundreds per day. Is this typical and to happen this quickly? Also now getting vibration sensations. Maybe that is fast muscle firing. I don’t know. Is this typical or possible? I am struggling immensely accepting what is happening.

 

[Nikki J]

If you mean by not much assessment in atrophy she did not stare at each area that isn’t necessary. When I had atrophy ( unnoticed by me) the nurse practitioner saw it in a glance. Literally.

If the standard strength exams don’t seem like much and you passed that says something. They don’t seem like much to me but my weak side fails them

Vibration feeling seems to get reported here a fair amount by people who don’t end up having ALS.

A neuro pulmonologist has had a lot of neuro training.

Twitching is non specific. Ignore them. Be concerned about weakness ( as in failure)

 

[Lostandalone]

Thank you Nikki. I am holding on to all hopes of positive but remains hard. I treasure everyone's feedback on here. My Mayo EMG and swallow study as well as followup with neuro at Mayo is next Wednesday. I will be sure to report back the findings.

My EMG that I had last Thursday did show denervation of the right lumbar paraspinal muscle in two places. This has me very concerned as not sure what this could be and if it could be pointing toward ALS. Hoping Mayo's EMG fares much better.

Positive thoughts and thanks to you all and your courageous journey.

Kim

 

[Nikki J]

Hoping for the best. Try to keep yourself happily busy while you wait for your appointments

 

[Lostandalone]

Hi Nikki......I appreciate the words of encouragement. I really need the support right now as I am very alone as my only family is my young son. I need some support and direction beyond what I am doing as I feel like I am in frantic mode.

Also, is it common for things to present so quickly as for the fasciculations and cramping? Perhaps I wasn't taking notice of them, but they started very localized in my foot and over the past 3 weeks have progressively spread to all areas of my body as well as the increased numbness type sensation and vibration feelings.

Additionally, as my original post indicated, my body is flaccid all over it seems. Also, I wake every day no with impressions all over my skin from my sheets and clothing. Even on my face. I know this occurs to people from time to time, but it is all over me and feeling like it is perhaps related to the breakdown of my muscle and body. I am a fit woman and work out (5'3" and 123 pounds), however my muscles at complete rest are mush. Is this indicative of ALS? Looking for some hope but seems to be fading by the day and harder for me to manage. Thanks again for all your insight.

Kim