Yukon
New member
- Joined
- Nov 8, 2023
- Messages
- 6
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UA
- City
- Sumy
Hello, first time on this forum,
I would like to share some worries. This is the first time I have written about my condition in this way, I hope I have gotten it right
I am 26 years old, and working as an artist.
In 2019 I was treated in the hospital for joints, at first my fingers curved from the swelling on the joints, x-ray showed bilateral coxaarthrosis 2 stages, sacroilielitis bilateral, periarticular osteoporosis on the hands, etc. also pains all over the body in the joints. As a result, I was injected every 3-4 months with Rheumoxicam and Thiatriazolin (10 days each).
All was well, the condition regulated, and swelling and pain subsided
From the end of 2021 until the end of spring 2022, the condition seemed to be back to normal.
But fatigue began to appear, which by winter became even more pronounced, in the early summer of 2023 I wanted to run, but for some reason, I could not, I thought that again the problem with the joints.
I took all the tests, and had a CT scan and X-ray of my joints - surprisingly, they were healthy, and blood tests were also normal. My rheumatologist advised me to see a neurologist who sent me for EMG and MRT of the spine and head with suspicion of multiple sclerosis. There is some minor osteochondrosis, but overall everything is good, 4 doctors said there are no clamps or anything else that could interfere with nerve function
On EMG said that possible signs of lesions of the lower motoneurons, as well as loss of sensory sensitivity in some nerves (later it turned out that with sensitive nerves all is well, for which the preliminary diagnosis was - sensory polyneuropathy).
Then I checked the rest of the organs and glands on ultrasound - everything was normal.
I was referred to physical therapy, but it didn't help.
where the physiologist said that certain muscle groups in different limbs were weakened.
Next, I went to a second doctor for a needle EMG and a sensory EMG.
According to the sensory EMG - everything is fine.
(also did a rhythmic simulation which showed 29% decrement).
On needle electromyography it was written: denervation-renervation process in muscles (without details).
According to EMG data, the doctor referred to other tests to confirm or exclude myasthenia gravis. We rechecked the tests and investigations for myopathies, myasthenia gravis, and SMA - everything was normal. The doctor also prescribed acetylcholine medication (Proserin), which improved my condition.
The doctor advised me to go for another EMG.
According to the results of the EMG, everything is normal except the needle EMG.
The results of the needle EMG
- Signs of lower motor neuron damage.
- Fasciculation, Fibrillation, and Positive Sharp Wave potentials in the biceps brachii on the left, the deltoids, the quadriceps muscle on the right, and both calf muscles.
- Also enlargement of the Motor Unit Potential in the right quadriceps and both calf muscles.
Based on these results, the doctor referred me to another city with suspicion of ALS (I haven't been able to make the trip yet).
But "Doctor-EMG" also advised and referred EMG to another neurologist.
Where I was examined for rare forms of myasthenia gravis, myasthenic Lambert-Eaton syndrome, and paraneoplastic syndromes - all normal.
In the end, the doctor tried to give me money, but I wouldn't let him take it. because a lot of money has been spent on all the research and he says more will be spent.
Also on the previous EMG, I was a little confused and concerned about fasciculations (as the muscles are supported very rarely), I decided to go again to the needle EMG,
according to the needle EMG:
- Moderate spontaneous activity in the form of fibrillation potentials, positive sharp waves were registered in the deltoid muscle on both sides, right biceps brachii.
- Potentials of motor units have shortened duration in the right deltoid muscle, right biceps and triceps brachii, right interosseous muscle, rectus femoris muscle, and left calf muscle.
Overall: moderate process activity
Also, a month and a half ago, I woke up on a Saturday and my right leg started to work very badly - it was constantly stumbling and buckling as if it was twice as badly controlled. Now it's "relatively normal" - I can walk for about 10 minutes without waddling, then it waddles again
The main symptoms that have been with me for the last year and a half and now:
- Constant severe fatigue, especially after 10min walking
- After waking up, I feel weak in my limbs.
- Difficulty climbing stairs (legs are heavy) with shortness of breath.
- Quickly tiring hands, especially fingers.
- Also slow hand movements, especially when doing dishes.
- Bruxism
- When resting, lying in bed in front of the TV, it's as if my leg muscles are twisting and I have to move them often.
- Quite often there is a foggy state, as if under alcohol, or some substances. After which it comes on, I have not been able to trace it.
- Expectoration of phlegm constantly and cough (started smoking 3 years ago) but it is not like smokers' coughs
(for a long time, like a year - one tonsil is swollen - maybe it's all related to some unknown autoimmune disease?)
For the last month and a half, I have had a problem with my right leg, where it tends to buckle and become weak
The only tests that differed a little more from the norm are Potassium - 6.32 (norm=3.5-5.1) and Vitamin D - 17.4 (norm=30-50)
I've been taking vitamins for over a month now, but it's not getting better.
Also cardiologist says that I have hypertension 2st, I thought to connect it to neurology, but still, the pressure began to jump a long time ago.
I will be very grateful for any advice, or assumption, as I do not understand what is happening to the body (in general, my doctors are not too verbose). I'm mainly worried about Motor Neuron Disease because 4+- years ago my mother was diagnosed with a bulbar form of ALS (although overall she is relatively normal, with fairly slow progression, and her voice has recovered, a little doubtful of her diagnosis, but still she does EMG every year to confirm ALS for disability), and my brother (on my mother's side) has Parkinson's. On the paternal side, my father and brother (on the father's side) died of cancer, but.... so far not worried, apparently not my option
Lately, I have been a little aggressive with everything and everyone, I try to restrain myself, but I am morally shaken, as all tests, MRT, and CT show normal, or almost normal, except for needle EMG - where they confirmed my symptoms + condition is getting progressively worse if compare every 3-4 months.
Now the doctor's working on a possible disease, but so far, nothing, he says we need to find out what it is now, we can't take a break from hospitals.
Thank you
Thanks if anyone read all the way through, didn't think a long post would come out.
Forgot to add some complaints:
- tremors in my hands (especially in my right hand) - The doctor said it's because of shoulder muscle weakness, but on EMG doc said the muscles are a little thin. In general, it was a weakness for a year only in my legs, but this summer my hand became heavier, which made it less comfortable to draw and work.
- I can't stand on my heels
- my hands have become awkward, I often drop my lighter/cigarettes/keys/phone, etc. I'm not sure how much this is expressed in the 1st or 2nd hand, as I'm right-handed and generally do everything with my right hand, so it's more noticeable in the right hand.
In addition to sending 1 neurologist to another city for suspected ALS, the 2nd neurologist sent me to do genetic testing for ALS. In general, how rational is it to suspect ALS in general? Because even though my right leg went out, it partially recovered after a month and a half (although sometimes it gets worse, floating state), and there are no constant twitches (isolated ones happen once in a few months, but that's in all people), + no constant twitching (sometimes shoulder can, but also quite rare).
Sorry for the English mistakes - bold text, and if necessary, I can provide all the tests, they are very much accumulated (although they are all in Ukrainian, but I can translate them in addition to diagnostics).
In addition to sending 1 neurologist to another city for suspected ALS, the 2nd neurologist sent me to do genetic testing for ALS. In general, how rational is it to suspect ALS in general? Because even though my right leg went out, it partially recovered after a month and a half (although sometimes it gets worse, floating state), and there are no constant cramps (isolated ones happen once in a few months, but that's in all people), + no constant twitching (sometimes shoulder can, but also quite rare).
I would like to share some worries. This is the first time I have written about my condition in this way, I hope I have gotten it right
I am 26 years old, and working as an artist.
In 2019 I was treated in the hospital for joints, at first my fingers curved from the swelling on the joints, x-ray showed bilateral coxaarthrosis 2 stages, sacroilielitis bilateral, periarticular osteoporosis on the hands, etc. also pains all over the body in the joints. As a result, I was injected every 3-4 months with Rheumoxicam and Thiatriazolin (10 days each).
All was well, the condition regulated, and swelling and pain subsided
From the end of 2021 until the end of spring 2022, the condition seemed to be back to normal.
But fatigue began to appear, which by winter became even more pronounced, in the early summer of 2023 I wanted to run, but for some reason, I could not, I thought that again the problem with the joints.
I took all the tests, and had a CT scan and X-ray of my joints - surprisingly, they were healthy, and blood tests were also normal. My rheumatologist advised me to see a neurologist who sent me for EMG and MRT of the spine and head with suspicion of multiple sclerosis. There is some minor osteochondrosis, but overall everything is good, 4 doctors said there are no clamps or anything else that could interfere with nerve function
On EMG said that possible signs of lesions of the lower motoneurons, as well as loss of sensory sensitivity in some nerves (later it turned out that with sensitive nerves all is well, for which the preliminary diagnosis was - sensory polyneuropathy).
Then I checked the rest of the organs and glands on ultrasound - everything was normal.
I was referred to physical therapy, but it didn't help.
where the physiologist said that certain muscle groups in different limbs were weakened.
Next, I went to a second doctor for a needle EMG and a sensory EMG.
According to the sensory EMG - everything is fine.
(also did a rhythmic simulation which showed 29% decrement).
On needle electromyography it was written: denervation-renervation process in muscles (without details).
According to EMG data, the doctor referred to other tests to confirm or exclude myasthenia gravis. We rechecked the tests and investigations for myopathies, myasthenia gravis, and SMA - everything was normal. The doctor also prescribed acetylcholine medication (Proserin), which improved my condition.
The doctor advised me to go for another EMG.
According to the results of the EMG, everything is normal except the needle EMG.
The results of the needle EMG
- Signs of lower motor neuron damage.
- Fasciculation, Fibrillation, and Positive Sharp Wave potentials in the biceps brachii on the left, the deltoids, the quadriceps muscle on the right, and both calf muscles.
- Also enlargement of the Motor Unit Potential in the right quadriceps and both calf muscles.
Based on these results, the doctor referred me to another city with suspicion of ALS (I haven't been able to make the trip yet).
But "Doctor-EMG" also advised and referred EMG to another neurologist.
Where I was examined for rare forms of myasthenia gravis, myasthenic Lambert-Eaton syndrome, and paraneoplastic syndromes - all normal.
In the end, the doctor tried to give me money, but I wouldn't let him take it. because a lot of money has been spent on all the research and he says more will be spent.
Also on the previous EMG, I was a little confused and concerned about fasciculations (as the muscles are supported very rarely), I decided to go again to the needle EMG,
according to the needle EMG:
- Moderate spontaneous activity in the form of fibrillation potentials, positive sharp waves were registered in the deltoid muscle on both sides, right biceps brachii.
- Potentials of motor units have shortened duration in the right deltoid muscle, right biceps and triceps brachii, right interosseous muscle, rectus femoris muscle, and left calf muscle.
Overall: moderate process activity
Also, a month and a half ago, I woke up on a Saturday and my right leg started to work very badly - it was constantly stumbling and buckling as if it was twice as badly controlled. Now it's "relatively normal" - I can walk for about 10 minutes without waddling, then it waddles again
The main symptoms that have been with me for the last year and a half and now:
- Constant severe fatigue, especially after 10min walking
- After waking up, I feel weak in my limbs.
- Difficulty climbing stairs (legs are heavy) with shortness of breath.
- Quickly tiring hands, especially fingers.
- Also slow hand movements, especially when doing dishes.
- Bruxism
- When resting, lying in bed in front of the TV, it's as if my leg muscles are twisting and I have to move them often.
- Quite often there is a foggy state, as if under alcohol, or some substances. After which it comes on, I have not been able to trace it.
- Expectoration of phlegm constantly and cough (started smoking 3 years ago) but it is not like smokers' coughs
(for a long time, like a year - one tonsil is swollen - maybe it's all related to some unknown autoimmune disease?)
For the last month and a half, I have had a problem with my right leg, where it tends to buckle and become weak
The only tests that differed a little more from the norm are Potassium - 6.32 (norm=3.5-5.1) and Vitamin D - 17.4 (norm=30-50)
I've been taking vitamins for over a month now, but it's not getting better.
Also cardiologist says that I have hypertension 2st, I thought to connect it to neurology, but still, the pressure began to jump a long time ago.
I will be very grateful for any advice, or assumption, as I do not understand what is happening to the body (in general, my doctors are not too verbose). I'm mainly worried about Motor Neuron Disease because 4+- years ago my mother was diagnosed with a bulbar form of ALS (although overall she is relatively normal, with fairly slow progression, and her voice has recovered, a little doubtful of her diagnosis, but still she does EMG every year to confirm ALS for disability), and my brother (on my mother's side) has Parkinson's. On the paternal side, my father and brother (on the father's side) died of cancer, but.... so far not worried, apparently not my option
Lately, I have been a little aggressive with everything and everyone, I try to restrain myself, but I am morally shaken, as all tests, MRT, and CT show normal, or almost normal, except for needle EMG - where they confirmed my symptoms + condition is getting progressively worse if compare every 3-4 months.
Now the doctor's working on a possible disease, but so far, nothing, he says we need to find out what it is now, we can't take a break from hospitals.
Thank you
Thanks if anyone read all the way through, didn't think a long post would come out.
Forgot to add some complaints:
- tremors in my hands (especially in my right hand) - The doctor said it's because of shoulder muscle weakness, but on EMG doc said the muscles are a little thin. In general, it was a weakness for a year only in my legs, but this summer my hand became heavier, which made it less comfortable to draw and work.
- I can't stand on my heels
- my hands have become awkward, I often drop my lighter/cigarettes/keys/phone, etc. I'm not sure how much this is expressed in the 1st or 2nd hand, as I'm right-handed and generally do everything with my right hand, so it's more noticeable in the right hand.
In addition to sending 1 neurologist to another city for suspected ALS, the 2nd neurologist sent me to do genetic testing for ALS. In general, how rational is it to suspect ALS in general? Because even though my right leg went out, it partially recovered after a month and a half (although sometimes it gets worse, floating state), and there are no constant twitches (isolated ones happen once in a few months, but that's in all people), + no constant twitching (sometimes shoulder can, but also quite rare).
Sorry for the English mistakes - bold text, and if necessary, I can provide all the tests, they are very much accumulated (although they are all in Ukrainian, but I can translate them in addition to diagnostics).
In addition to sending 1 neurologist to another city for suspected ALS, the 2nd neurologist sent me to do genetic testing for ALS. In general, how rational is it to suspect ALS in general? Because even though my right leg went out, it partially recovered after a month and a half (although sometimes it gets worse, floating state), and there are no constant cramps (isolated ones happen once in a few months, but that's in all people), + no constant twitching (sometimes shoulder can, but also quite rare).
