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HenryBrouwer

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Hi everyone. Thx so very much for all the information on this web site. I have read thru the 'Before Posting Information' and it has provided me with a wealth of information that I had been unaware of. Having said that, I still have some lingering questions/concerns and I trust that no one will be upset with me for posting this. I am a 56 year old male.

April 2020, I started having issues with my hands and fingering tingling and going numb occasionally. My big toes would occasionally go numb as well and tingling toes. I had a neurologist appt in August 2020 to check into why this was happening. I can't remember exactly what the neurologist did, but I believe he completed reflex test on knees, eye/hand coordination test and completed a nerve conduction test on both hands/arms. The diagnosis was severe carpal tunnel in left hand and severe-moderate carpal tunnel in right hand. He told me to stop weight-lifting and come back for follow-up testing in 3 months. The follow-up appt (Nov, 2020) with the same nerve testing redone, it showed that the carpal tunnel was basically gone and all nerve testing was in normal range. I have had no issues with tingling/numbness, etc for the next 4 months (also did not do any weightlifting during these 4 months)

I started working out again in March, 2021 and I had no issues until recently.

Move to the 2nd weekend in May, 2021 and I was opening the pool, which meant a lot of time in a squat position and also underneath the deck where the pool pump was, so again kneeling a lot and in squat position. I woke up the next day sore, but noticed that night that my left calf muscles were now twitching randomly. I wasn't too concerned as I thought I had stretched some muscles and twitching would go away. But it didn't and then in the 2 days following, I noticed this twitching also happening in my right calf. This twitching now is happening constantly in both calves as well as hamstrings and quads randomly. I think I can also sometimes feel either tingling and/or muscle twitches in arms and face, but these are very random and not continuous like the twitching in my legs. I also am starting to have pains in my calf muscles and hamstring muscles on both legs (muscles ache and feel tight). A few days later, it felt like I was having issues with my tongue and lips (numbness/tingling). I felt like sometimes I was slurring / voice getting horse a lot more and I would constantly ask my wife if she could understand me. All these symptoms pointed me to ALS when goggling internet (I know, bad on me). Now I am starting to feel a little weaker all over, maybe not as steady on my feet (not sure if this is the anxiety or real symptoms). I am still able to run, walk and lift the same amount of weights in both arms, so It doesn't appear that I have any weakness in hands/arms. I do sometimes feel that my left fingers on my left hand seem a lot stiffer than fingers on my right hand. I have also noticed that my calves/ankles seem a lot smaller in nature (still appear to be the same symmetrical size from what I can see in mirror), but perhaps that could be attributed to losing 15 Ibs on a new diet my wife had me on since February . I know I have a lot on bad anxiety and I am constantly thinking about ALS after goggling symptoms. (I have a buddy that is currently going thru ALS).

Could these symptoms be pointing to the start of ALS? Would ALS symptoms happen so quickly (2 weeks time)? I know my anxiety is at a high now and I am having issues eating/sleeping. I will also be scheduling another neurologist appt in the future as well.

Thx to everyone on this site and I apologize if I am wasting people's time answering this post. God bless all of you.


Sorry, I also forgot to say that toes on both feet go numb randomly as well in the past few weeks.
 

affected

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I'm pretty sure the sticky post you read first answered all this. (and that post is there so our paralysed members on breathing machines don't need to say this over and over every day)
All these things you 'feel' have nothing to do with a disease that starts in the brain and stops sending signals to tell muscles to move.

Sounds like something to take back to your doctor. All the best.
 

lgelb

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My first move would be to reexamine the new diet, which could be leaving you low on electrolytes, iron, B vitamins, who knows. Some people even get jumpy with low-fat diets.

Twitching and stiffness feed on themselves and each other. You might consider therapeutic massage if feasible in your area, even a hot tub.

Agree, nothing to worry about as regards ALS.

Best,
Laurie
 

HenryBrouwer

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Thx very much for the responses. I forgot to add to my post that I have already had blood work completed to see if any deficiencies in things such as Calcium, Potassium, Magnesium, had creatine and thyroid blood work completed and all came back fine. I don't think I was tested for iron, electrolytes, etc. I am just very concerned with why these muscle twitches just appeared one day and have now are continuous. Again, I apologize for posting on this forum and meant no disrespect to anyone. I very much appreciate all the fantastic info on this site and thx again for the responses. God bless.
 

affected

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That's no problem, twitching means nothing, just keep working with your doctor as they are the one examining you.
 

HenryBrouwer

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Thx very much again to both of you.
 

HenryBrouwer

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Hi, sorry to do this, but you seem to have a wealth of info and I just wanted to run something by you. Since we last communicated, I have still been having continuous twitches in my calves and random in my thighs on both sides, but now I am getting more twitching on my left side (left fore-arm and a lot of left eye twitching. I have also been very shaky for the last 5 days.

I remember reading one post on this forum that a person had indicated that he was feeling weakness from his shoulders down to his fingers as well as experiencing muscle twitching in calves, thighs and arms. I believe it was Laurie that responded that ALS virtually always starts with one limb on one side and 'gradually' moves its way up (hand to arm, etc). My question is, was Laurie referring to muscle weakness or failure that progresses in ALS, as this person had also mentioned muscle twitching as one of his prime concerns? I believe Laurie was referring to muscle, but does muscle just stop working or in beginning stages, does it make it more difficult to do things that was done with ease before? Also, I don't see anything on the forum on shakiness and when reading Dr Goggle on this, it always refers to shakiness as issues with nerve diseases.

Again, no disrespect to all, but you all have been so helpful in answering questions and appear to know more than my doc on this disease. Thx all and God bless.
 

affected

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twitching and feeling week mean nothing
please go ask your doctor to examine you again
 

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Yes, I was referring to muscle weakness (loss of function), not twitching, not shakiness.

Twitching can tire you out, causing a feeling of shakiness. Anxiety about it is draining as well. So it may be time, now that you know it's benign, to keep a food/sleep/liquid/exercise diary with an eye to reducing it. It can be done. Blood work only "sees" a tiny percentage of electrolytes, etc. so it's not always a reliable guide to the things you can still do to feel better.

You can also video your sleep to see if there are any breathing or limb movement issues to discuss with your doc around getting a sleep study.
 

HenryBrouwer

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Thx again for responses, ladies. I guess I will be booking an appt with doctor again to review everything, including shakiness and sore /stiff knuckle on one finger and one toe and muscle twitching.

I do have slight sleep apnea and I wear a mouthpiece at night for this. I have also experienced sudden 'jerks' when I sleep which wakes me up, but I have experienced this for 10+ years and these are random.

I am not sure if I still would need to book a neurologist appt, based on what your feedback has been. I have been taking extra magnesium as well to see if that helps with the constant muscle twitching. Based on all your experiences, anything else to try in order to rid me of these muscle twitches?

Thank you to both you wonderful ladies to taking the time to answer all my questions/concerns. You are the best!!!!

God bless.
 

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We only deal with ALS here, that takes all our energy and beyond. Your doctor however can help you work on the twitching if it bothers you. Many people simply twitch so that is why working with a doctor that is examining you is the best way forwards. All the best.
 

HenryBrouwer

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Thx again ladies for all the info you provided. Very much appreciated and God bless.
 

HenryBrouwer

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Hi ladies, I truly do apologize for asking some additional questions, as I know you are all very busy with answering real questions, so please feel free to ignore this.

I had mentioned earlier about my calves seeming much smaller than they were before and also my calf muscles on both legs seem very 'floppy' now. I know I have lost some weight and I expect legs to become a 'little' skinnier, but now I have had people ask me 'what happened to your legs, they are so skinny'? I have compared pictures form last year and I have lost a lot of weight/muscle on my calves over the past year.

I have researched your sticky posts and it had mentioned that muscle wasting or atrophy is a symptom of ALS, but that it also generally follows clinical weakness/failure.

Laurie had also mentioned in a previous post that this would almost always start in one limb and does not happen in asymmetrical limbs at the same time. (Meaning both arms or both legs simultaneously). If my calves appear to be proportionate and similar width in diameter (although a lot smaller), then can I assume that this not be a symptom of ALS? Also, I don’t seem to have any issues doing calf raises, etc, so the calf muscles still appear to still be working and not shutting down.

Also, lately I have been feeling ‘tremors’ in my upper body and arms/hands……………my hands are not really shaky, but I feel things trembling inside (feels like I am chilled). I don’t see anything on your sticky posts on this, so am I safe to assume that this is not typically a symptom of ALS either? This happens a lot when I am eating.

Lastly, I also did a reflex test on knees and compared with my wife and my reflexes seemed to be more active than my wife’s. I know this is also a symptom of ALS, but would something else first happen (Clinical weakness/failure, etc) before this symptom would be seen?

Muscle twitching is still happening in calves, thighs, left eye and occasionally arms, but not too concerned about these by themselves, as you both had mentioned that this should not be a concern. I have been increasing magnesium to try and get rid of these muscle twitches.

I know I am going crazy thinking about all symptoms and I do apologize again for sending you these questions again, I know you are probably getting tired of my questions and I am sorry for that…………… I know you all have enough on your plate dealing with ALS questions and your guidance and wisdom on this topic is extremely helpful to all who visit this forum, so if these are 'dumb' questions on my part, please do not respond.

Thx and God bless you all.

Henry
 

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Are you seeing a doctor? They are the person you should ask. ALS atrophy is generally seen after significant weakness and is usually asymmetrical. Over time the other side will atrophy too of course but not simultaneously.

that inside trembling does not sound typical or even familiar.

are you and your wife trying to check each other’s reflexes? Are either of you clinicians? Assessing reflexes is a skill that is not to be learned from youtube. If you think you can check your own reflexes you can’t. Even a neurologist couldn’t. Brisk reflexes even if properly tested are common usually normal and often associated with anxiety.
self testing in general is extremely unhealthy. Please stop that and see a doctor
 

affected

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Go see a doctor, that is what they are for. It is not appropriate to post long amounts of text to terminally ill people to try and pick apart and figure out. Please, get help from the appropriate place.
 
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