Dan
New member
- Joined
- Jul 31, 2020
- Messages
- 4
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- PL
- State
- MZ
- City
- Warsaw
First of all, I wanted to say thank you for keeping this part of the forum open despite all negative attitude that people who ask questions here can express. I apologies to anyone to whom my post would seem offensive or ignorant in any way, this is definitely not the mindset I am writing all this with.
I am 26yo male. For some 5 weeks I had different neurological symptoms. It started intermittent with tingling and numbness in fingers and toes, then this tingling and numbness increased in both frequency and intenaivity, then it went away and left a place for joint pain, muscle pain, soreness and stiffness of muscles without exercise or very very little exercise, muscle twitching, tremor and twitching of fingers, wrists, feet, legs, and other parts of body. Sometimes I am slightly shaking as a whole, and sometimes have feeling that I will faint now, though it did not happen so far, just once in the middle of the night for Mo reason. As for muscle twitching, they are not long in duration and not painful. Fingers and etc. twitching are usually one-off, not painful and mostly happen in the evening, before sleep, and in the morning after sleeping.
In addition to twitching I feel weakness in several areas, such as right arm and left leg (down from the knee). It feels like muscles are getting tired faster specifically in these areas, and that in general all muscles are much faster to become painful/sore after some exercise. I don't seem to be tripping over or fall, but recently it looks to me that I got some slight issues with balance. As well, I perceive a less fluent and precise movements, particularly in my hands and fingers.
Now, after exercise yesterday (7km run + 20 km bike, none of those were not fast at all so without much power spent) I feel my left calf and left side of the leg from little bit above the knee (including around knee) and down to feel weaker, sore and sometimes a bit painful. I still can do calf rise, for example, but it feel more difficult then on the right side, and when doing so it does not feel in the same way as on the right (as some sort of lack of stability - I don't feel muscle to be "rock solid" under load and have the same "nice and easy" feeling from the left leg as I have it from the right one). Sometimes I even have a feeling that movement amplitude on the left foot is lower (eg its harder to bend my left foot in different directions) bit it seem to be full or at least almost full when pushed purposefully. I am sorry that I cannot explain it in any better way. I do not recall having this kind of issues before exercising and after previous exercising (but maybe I did not pay attention). I run and riding bike once a week (or even more rare). Today I started to ride a bike daily (commuting) as I came back to work and felt the same when I rode yesterday, with all feelings that I described just above. Standing on my toes because of it just does not feel "right" I and somewhat feels limited. Additionally, this part of leg is cramping both under load and in rest, and under the same those load muscles are painful much more on the left (sometimes as well like burning feeling) and feel tired. I rember having a bit of pain and tired feeling in the similar area after exercise before, but do not remember weakness or other described problems with calf and other parts.
In addition, I have some troubles swallowing. For a week already I have a feeling that my tongue have something on the base of it from the right side, like something was stuck. I can feel it when I move my tongue, but was not able to see or extract anything that might have been there. Small bits of food are getting stuck around there, too, so I need to move the tongue to get them out and swallow. Some solid food seem to stuck in the throat and somewhere in the region of the right tonsil, from the side of the tongue, causing discomfort, cannot be moved with more food/drink and usually getting a bit better after some time. After some time, this started causing pain as well on swallowing and after eating, for some time at least. Since recent a persistent pain in the throat appeared, mostly on the right side, not like a strep throat or smth but more like muscle pain/stiffness/spasms, can become worse when speaking, moving tongue, using throat muscles, yawning, or after eating or drinking (sometimes as well on swallowing food), though it persist almost constantly. It's mostly on the right side of Adam's apple, and usually on this level and sometimes up to the jaw bone, sometimes changing the location as well (and sometimes it goes lower, like along the big neck muscle). Occasionally, same appears on the left side as well. Additionally, after eating or drinking, I sometimes have like the ball of mucus in my throat, that also has some tiny pieces of food/crumbs etc. which I need to cough up and then can swallow back. I can have excessive mucus to cough up after drinking, too. Otherwise, food and liquids seems to go along to stomach quite fine, I do not seem to choke more frequent than usual (maybe 1 or 2 per week), although some harder small pieces of food or crumbs can make me cough more often. Pain is persistent, rather deep and numb, with some brief periods of a bit more intense pulsing pain. Except of the fact that I am burping more than usual, and having some unpleasant feelings when swallowing saliva (like burning or little pain, this still happens rare) I did not see any big changes from the side of my upper digestive tract either. Pain and discomfort seem to become at least a bit better after gargling (not always working though) and overnight; in the beginning was also using some tablets for sore throat but now those do not make any difference. I was not diagnosed with GERD or anything else before, neither do I have problems like that before. Occasionally, I cough now as well, but there are literally no other symptoms of infection.
Once the initial tingling became persistent, I went to neuro and got some quick entry test. I got referred for neurography (NCV) study to confirm/exclude polineuropathy, which was OK. Just around that time other described symptoms appeared. I described those to my doctor, and she referred me for EMG to test for tetany, which came out positive. When I asked doctor about if this can be ALS, she said that I am too young and it happens super rare in my age, that I must have had some neurological signs on the exam (which I suppose means that I did not have those, except she said I had positive Chvostek sign), and that on the first polyneuropathy NCV study they would have seen something suspicious as well. She hinted something about MS, though, but then said smth like "Let's not talk about it now as we will start running circles, come back in 2 month to check and see what is going on". I got prescribed 300mg of Magnesium per day and some vit D3 which I started 2 days ago, and I need to come back after 2 month for a check up; cannot say so far if all supplements make any difference. I have done another EMG on Saturday as I was too scared about ALS, they tested 3 muscles in my right hand that was stiff and achy at that time, tongue muscle under the chin when I mentioned difficulty swallowing and 1 muscle on every other limb, which seem to be OK as well, please find some parts of results attached.
With all this, taking into account all symptoms I described, I have 4 questions:
1. About the swallowing issues and throat pain - does the EMG of tongue muscle excluded ALS from the list of possible causes completely and I need to look somewhere else for a reason?
2. About the left leg - EMG was done higher than the site where all symptoms have appeared (somewhere near quadriceps?). Does it anyway exclude ALS as a possible reason of issues and I need to look somewhere else for a reson?
3. Does any of my symptoms with neck, throat and swallowing that I describe match any ALS bulbar symptoms, starting ones or otherwise?
4. Does any leg symptoms describe anything similar to ALS symptoms regarding muscles?
I did read sticky posts, and I admit that some if not most of things I describe here can potentially be explained by those. However, due to 2 factors - some not very specific wording in some parts of sticky posts and me reading stories in the Internet about people who developed ALS having similar initial things that I describe - I decided to write here hoping that you would be kind to give me an advice on all this. I ask for apology in advance and I will definitely become a supporter for the forum just to say thank you for your time and effort, and to help keep this forum up and running.
Thank you very very much in advance. I just wanted to mention that I do have confirmed health anxiety, and I am fighting with it as hard as I can, with help of specialists (without any drugs, at least so far). I cannot even imagine how hard is it to live with this condition, and I am sincerely sorry if my post will cause any frustration with anyone who will see it. With all that said, I am immensely grateful to everyone who will reply, and, on the other hand, I will understand if you will just close the topic without answer.
I am 26yo male. For some 5 weeks I had different neurological symptoms. It started intermittent with tingling and numbness in fingers and toes, then this tingling and numbness increased in both frequency and intenaivity, then it went away and left a place for joint pain, muscle pain, soreness and stiffness of muscles without exercise or very very little exercise, muscle twitching, tremor and twitching of fingers, wrists, feet, legs, and other parts of body. Sometimes I am slightly shaking as a whole, and sometimes have feeling that I will faint now, though it did not happen so far, just once in the middle of the night for Mo reason. As for muscle twitching, they are not long in duration and not painful. Fingers and etc. twitching are usually one-off, not painful and mostly happen in the evening, before sleep, and in the morning after sleeping.
In addition to twitching I feel weakness in several areas, such as right arm and left leg (down from the knee). It feels like muscles are getting tired faster specifically in these areas, and that in general all muscles are much faster to become painful/sore after some exercise. I don't seem to be tripping over or fall, but recently it looks to me that I got some slight issues with balance. As well, I perceive a less fluent and precise movements, particularly in my hands and fingers.
Now, after exercise yesterday (7km run + 20 km bike, none of those were not fast at all so without much power spent) I feel my left calf and left side of the leg from little bit above the knee (including around knee) and down to feel weaker, sore and sometimes a bit painful. I still can do calf rise, for example, but it feel more difficult then on the right side, and when doing so it does not feel in the same way as on the right (as some sort of lack of stability - I don't feel muscle to be "rock solid" under load and have the same "nice and easy" feeling from the left leg as I have it from the right one). Sometimes I even have a feeling that movement amplitude on the left foot is lower (eg its harder to bend my left foot in different directions) bit it seem to be full or at least almost full when pushed purposefully. I am sorry that I cannot explain it in any better way. I do not recall having this kind of issues before exercising and after previous exercising (but maybe I did not pay attention). I run and riding bike once a week (or even more rare). Today I started to ride a bike daily (commuting) as I came back to work and felt the same when I rode yesterday, with all feelings that I described just above. Standing on my toes because of it just does not feel "right" I and somewhat feels limited. Additionally, this part of leg is cramping both under load and in rest, and under the same those load muscles are painful much more on the left (sometimes as well like burning feeling) and feel tired. I rember having a bit of pain and tired feeling in the similar area after exercise before, but do not remember weakness or other described problems with calf and other parts.
In addition, I have some troubles swallowing. For a week already I have a feeling that my tongue have something on the base of it from the right side, like something was stuck. I can feel it when I move my tongue, but was not able to see or extract anything that might have been there. Small bits of food are getting stuck around there, too, so I need to move the tongue to get them out and swallow. Some solid food seem to stuck in the throat and somewhere in the region of the right tonsil, from the side of the tongue, causing discomfort, cannot be moved with more food/drink and usually getting a bit better after some time. After some time, this started causing pain as well on swallowing and after eating, for some time at least. Since recent a persistent pain in the throat appeared, mostly on the right side, not like a strep throat or smth but more like muscle pain/stiffness/spasms, can become worse when speaking, moving tongue, using throat muscles, yawning, or after eating or drinking (sometimes as well on swallowing food), though it persist almost constantly. It's mostly on the right side of Adam's apple, and usually on this level and sometimes up to the jaw bone, sometimes changing the location as well (and sometimes it goes lower, like along the big neck muscle). Occasionally, same appears on the left side as well. Additionally, after eating or drinking, I sometimes have like the ball of mucus in my throat, that also has some tiny pieces of food/crumbs etc. which I need to cough up and then can swallow back. I can have excessive mucus to cough up after drinking, too. Otherwise, food and liquids seems to go along to stomach quite fine, I do not seem to choke more frequent than usual (maybe 1 or 2 per week), although some harder small pieces of food or crumbs can make me cough more often. Pain is persistent, rather deep and numb, with some brief periods of a bit more intense pulsing pain. Except of the fact that I am burping more than usual, and having some unpleasant feelings when swallowing saliva (like burning or little pain, this still happens rare) I did not see any big changes from the side of my upper digestive tract either. Pain and discomfort seem to become at least a bit better after gargling (not always working though) and overnight; in the beginning was also using some tablets for sore throat but now those do not make any difference. I was not diagnosed with GERD or anything else before, neither do I have problems like that before. Occasionally, I cough now as well, but there are literally no other symptoms of infection.
Once the initial tingling became persistent, I went to neuro and got some quick entry test. I got referred for neurography (NCV) study to confirm/exclude polineuropathy, which was OK. Just around that time other described symptoms appeared. I described those to my doctor, and she referred me for EMG to test for tetany, which came out positive. When I asked doctor about if this can be ALS, she said that I am too young and it happens super rare in my age, that I must have had some neurological signs on the exam (which I suppose means that I did not have those, except she said I had positive Chvostek sign), and that on the first polyneuropathy NCV study they would have seen something suspicious as well. She hinted something about MS, though, but then said smth like "Let's not talk about it now as we will start running circles, come back in 2 month to check and see what is going on". I got prescribed 300mg of Magnesium per day and some vit D3 which I started 2 days ago, and I need to come back after 2 month for a check up; cannot say so far if all supplements make any difference. I have done another EMG on Saturday as I was too scared about ALS, they tested 3 muscles in my right hand that was stiff and achy at that time, tongue muscle under the chin when I mentioned difficulty swallowing and 1 muscle on every other limb, which seem to be OK as well, please find some parts of results attached.
With all this, taking into account all symptoms I described, I have 4 questions:
1. About the swallowing issues and throat pain - does the EMG of tongue muscle excluded ALS from the list of possible causes completely and I need to look somewhere else for a reason?
2. About the left leg - EMG was done higher than the site where all symptoms have appeared (somewhere near quadriceps?). Does it anyway exclude ALS as a possible reason of issues and I need to look somewhere else for a reson?
3. Does any of my symptoms with neck, throat and swallowing that I describe match any ALS bulbar symptoms, starting ones or otherwise?
4. Does any leg symptoms describe anything similar to ALS symptoms regarding muscles?
I did read sticky posts, and I admit that some if not most of things I describe here can potentially be explained by those. However, due to 2 factors - some not very specific wording in some parts of sticky posts and me reading stories in the Internet about people who developed ALS having similar initial things that I describe - I decided to write here hoping that you would be kind to give me an advice on all this. I ask for apology in advance and I will definitely become a supporter for the forum just to say thank you for your time and effort, and to help keep this forum up and running.
Thank you very very much in advance. I just wanted to mention that I do have confirmed health anxiety, and I am fighting with it as hard as I can, with help of specialists (without any drugs, at least so far). I cannot even imagine how hard is it to live with this condition, and I am sincerely sorry if my post will cause any frustration with anyone who will see it. With all that said, I am immensely grateful to everyone who will reply, and, on the other hand, I will understand if you will just close the topic without answer.