Falone
Member
- Joined
- Feb 13, 2021
- Messages
- 10
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
- State
- UK
Hi there,
As per the mod's request, I'm providing an update on my situation - previous thread here: Could this be ALS? 25m - after having just had another EMG. If you look at my previous thread you will see that I have been suffering from constant, all-over-body fasciculations accompanied by progressive muscle weakness and atrophy for about 2.5-3 years now. My problems began with a sudden loss of the ability to burp in August 2018. It was as though a bunch of muscles at the back/bottom of the top of my throat suddenly went slack and numb (by which I don't mean I wouldn't feel it if you pricked them but that there wasn't the usual responsiveness, it's a difficult sensation to explain). At this time I began suffering from frequent, unexplained yawning, hiccuping and microburping, having hundreds a day. A few months later I began having facial twitching, including cheek and lip twitching and jaw jerks, then in June 2019 I suddenly lost the ability to swallow normally. The sensation was identical to what occured with the burping. Several muscles below my chin, or at least I assume that's what they were, suddenly went slack, the muscles for swallowing kept spasming and would not coordinate. I could barely swallow for about three weeks before I learned an alternative technique for swallowing, triggering the swallow in a different way and was then able to swallow more effectively, although this has since slowly declined again. Unfortunately, around this time I began suffering from mild but progressive neck, core, arm and leg weakness, in that order, always with fasciculations. This was mild at first but has continued and gradually become more severe to the point where since mid 2020 I have been unable to work out due to weakness and extreme fatigue as well as poor recovery and have recently had to give up sports because my muscles are buckling. My facial muscles are now so weak that I cannot smile without everything twitching instantly and my speech has begun to deteriorate accompanied by clear tongue atrophy.
As I'm sure you can appreciate, given the fasciculations, progressive weakness and atrophy of various limbs and muscles all over my body I have been concerned about ALS. Once various structural disorders to account for my swallowing etc. were ruled out in late 2019/early 2020 I began investigating possible neurological causes. In February 2021 I saw a neurologist who based on my description of my symptoms was concerned about ALS. However, while he noticed fasciculations, a tremor, brisk reflexes and weakness, he said that he did not think my weakness was clinical and that he thought ALS was unlikely. I was not completely reassured by this since (1) there are few other explanations for my symptoms, and (2) he is not an ALS specialist. He said that I could have an EMG, which I did and that came back normal, apparently, having tested perhaps three of four limbs, mainly on my right side. I ruled ALS out at that point and went looking for other causes of my symptoms.
Unfortunately, since then my symptoms have continued to worsen and particularly with speech difficulties and tongue atrophy, as well as now really stark arm weakness, much worse on my left side, I have begun to worry again. I saw a local GP, who detected clinical weakness now and said that they are concerned that I might have ALS or another neuromuscular disorder and have referred me to a neurologist for another opinion. In the meantime they ran several blood tests. I had normal CK levels, apparently ruling out a myopathy or dystrophy, I tested negative for myaesthia gravis (sp) antibodies, so that is off the table too. The only thing that was abnormal was that I have scored consistently below normal testosterone and I also had a single blood test which came low for cortisol. I have recently had a battery of other blood tests and a stim test to check for possible Addison's disease or another similar disorder, but in truth I expect these to come back negative.
Because the waiting list to see a neurologist on the NHS is so long I have recently paid for a private EMG. However, this process was disappointing. The guy who did this is/was again not an ALS, or even a neuromuscular specialist, was running late so rushed my test and only did two limbs - my right hand and foot - which are actually where my symptoms are the least prevalent. He said that the readings were almost exactly the same as my last test on those limbs a year ago and so there was no evidence of deenervation as would be expected with ALS. But at this point I must admit that this has not reassured me. I know my body, all my symptoms are real, significant, and no other viable causes seem to exist that could explain all this, and I have read too many stories of people who were told they had 'normal' emgs by non-ALS specialists or by EMG operators who didn't do the most symptomatic areas etc. So I have booked an appointment to see an ALS specialist in London privately in a couple of weeks time.
I'm hoping that he will give me some answers but in the meantime, I would be very grateful for anyone's thoughts on what on earth could be going on with my body. Every symptom I report is accurate, many have been ratified by doctors now, and from everything I have read my case seems to point towards ALS, especially given that the common mimics have been ruled out. This is consuming my life. I want to be well again. To be able to work out, to exercise, and for this steady decline of functions to stop, but the doctors seem clueless, and answers are slow in coming.
Thank you,
Falone
EDIT: To the mods, please keep this thread open as I will update it again once I have seen the ALS specialist in a week or so.
As per the mod's request, I'm providing an update on my situation - previous thread here: Could this be ALS? 25m - after having just had another EMG. If you look at my previous thread you will see that I have been suffering from constant, all-over-body fasciculations accompanied by progressive muscle weakness and atrophy for about 2.5-3 years now. My problems began with a sudden loss of the ability to burp in August 2018. It was as though a bunch of muscles at the back/bottom of the top of my throat suddenly went slack and numb (by which I don't mean I wouldn't feel it if you pricked them but that there wasn't the usual responsiveness, it's a difficult sensation to explain). At this time I began suffering from frequent, unexplained yawning, hiccuping and microburping, having hundreds a day. A few months later I began having facial twitching, including cheek and lip twitching and jaw jerks, then in June 2019 I suddenly lost the ability to swallow normally. The sensation was identical to what occured with the burping. Several muscles below my chin, or at least I assume that's what they were, suddenly went slack, the muscles for swallowing kept spasming and would not coordinate. I could barely swallow for about three weeks before I learned an alternative technique for swallowing, triggering the swallow in a different way and was then able to swallow more effectively, although this has since slowly declined again. Unfortunately, around this time I began suffering from mild but progressive neck, core, arm and leg weakness, in that order, always with fasciculations. This was mild at first but has continued and gradually become more severe to the point where since mid 2020 I have been unable to work out due to weakness and extreme fatigue as well as poor recovery and have recently had to give up sports because my muscles are buckling. My facial muscles are now so weak that I cannot smile without everything twitching instantly and my speech has begun to deteriorate accompanied by clear tongue atrophy.
As I'm sure you can appreciate, given the fasciculations, progressive weakness and atrophy of various limbs and muscles all over my body I have been concerned about ALS. Once various structural disorders to account for my swallowing etc. were ruled out in late 2019/early 2020 I began investigating possible neurological causes. In February 2021 I saw a neurologist who based on my description of my symptoms was concerned about ALS. However, while he noticed fasciculations, a tremor, brisk reflexes and weakness, he said that he did not think my weakness was clinical and that he thought ALS was unlikely. I was not completely reassured by this since (1) there are few other explanations for my symptoms, and (2) he is not an ALS specialist. He said that I could have an EMG, which I did and that came back normal, apparently, having tested perhaps three of four limbs, mainly on my right side. I ruled ALS out at that point and went looking for other causes of my symptoms.
Unfortunately, since then my symptoms have continued to worsen and particularly with speech difficulties and tongue atrophy, as well as now really stark arm weakness, much worse on my left side, I have begun to worry again. I saw a local GP, who detected clinical weakness now and said that they are concerned that I might have ALS or another neuromuscular disorder and have referred me to a neurologist for another opinion. In the meantime they ran several blood tests. I had normal CK levels, apparently ruling out a myopathy or dystrophy, I tested negative for myaesthia gravis (sp) antibodies, so that is off the table too. The only thing that was abnormal was that I have scored consistently below normal testosterone and I also had a single blood test which came low for cortisol. I have recently had a battery of other blood tests and a stim test to check for possible Addison's disease or another similar disorder, but in truth I expect these to come back negative.
Because the waiting list to see a neurologist on the NHS is so long I have recently paid for a private EMG. However, this process was disappointing. The guy who did this is/was again not an ALS, or even a neuromuscular specialist, was running late so rushed my test and only did two limbs - my right hand and foot - which are actually where my symptoms are the least prevalent. He said that the readings were almost exactly the same as my last test on those limbs a year ago and so there was no evidence of deenervation as would be expected with ALS. But at this point I must admit that this has not reassured me. I know my body, all my symptoms are real, significant, and no other viable causes seem to exist that could explain all this, and I have read too many stories of people who were told they had 'normal' emgs by non-ALS specialists or by EMG operators who didn't do the most symptomatic areas etc. So I have booked an appointment to see an ALS specialist in London privately in a couple of weeks time.
I'm hoping that he will give me some answers but in the meantime, I would be very grateful for anyone's thoughts on what on earth could be going on with my body. Every symptom I report is accurate, many have been ratified by doctors now, and from everything I have read my case seems to point towards ALS, especially given that the common mimics have been ruled out. This is consuming my life. I want to be well again. To be able to work out, to exercise, and for this steady decline of functions to stop, but the doctors seem clueless, and answers are slow in coming.
Thank you,
Falone
EDIT: To the mods, please keep this thread open as I will update it again once I have seen the ALS specialist in a week or so.