Pippo123
New member
- Joined
- Jul 11, 2024
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
Hi all - first, I'd like to thank you in advance for addressing questions in this channel. The fact that this channel even exists is a sign of your dedication to supporting others. I'll try to be brief.
I am 39yo male and since January 2024 I have been having some weird symptoms:
It started with "globus sensation" in the right hand side of my throat. Initially no pain, difficulties swallowing or speaking. The doctors who examined me (see below) noticed hoarseness, however my wife does not think that this is new for me (I also had not noticed).
In May I started having a weird intermittent pain in mi right jaw, teeth, ear and throat, and shortly after it spread to my right shoulder all the way down to my right hand (top of my fingers). When the pain in my face area (ears, jaw) is strongest, some spots are actually quite tender to the touch.
Currently (July 2024) I have the same weird pain, coming and going, on both the right and left sides of my body (ears, teeth, shoulders, arms, hands, legs, feet), but predominantly still on the right. The globus sensation remains, but now oscillates between left and right. Sometimes is stronger than other times. Pain comes in waves that may last just one second or a couple of minutes. Sometimes pain remains for longer, but it is very mild. Sometimes it feels like burning (particularly in my shoulders), other times more like stabbing pain.
For a month or two between June and July 2024, I had distinct muscle pain in the right hand side of my upper back, between the shoulder blades. Felt like a contracture or other muscle injury. This has now improved substantially, but there is a spot next to my spine which remains tender to the touch.
As of 1 month ago, I started noticing twitching. This is widespread and it happens in every limb, in my back, neck and sometimes my face. It is mostly sporadic: only one or two small twitches, although there have been a couple cases in which one muscle twitched more regularly (say 10-20 times a day) for a few days. This was the case for the muscle that moves my right thumb and one muscle in my neck. Twitching seems to be more frequent in the morning.
I do not have weakness and did not notice a change in the level of my coordination (I am quite clumsy as a baseline). However, in recent weeks (admittedly after becoming worried about ALS), I have developed a strange feeling in my lips and the region around my mouth. It's not pain nor tingling nor numbness, more like an awareness that this part of my body exists. Similar to restlessness. Sometimes, it makes me feel like I struggle to spell out words, as if those muscles were lacking coordination, but my wife says she hasn't noticed any changes in the way I speak.
I have done many tests, some of them privately in my home country (Italy) given that support from the NHS in the UK (where I live) is not great. Here is a list and outcomes:
- Full blood works in March 24. All normal except for severe vitamin D deficiency (taking supplements)
- Chest X-ray in April 24. Normal
- Various ENT visits and laryngoscopies. All normal except for mild signs of GERD (which I knew I had). I have been prescribed treatment with PPI inhibitors etc, but no help. One ENT said that the muscles down my throat look tensed.
- CT scan of the chest. All normal.
- MRI of the neck, brain and whole spine. All normal except for some mild cervical protrusions that should be asymptomatic.
- Seen general practctitioncer doctors (many times). One did test my nerves and found all normal.
- Seen a neurologist (I don't think ALS specialist) in June 2024. He also tested my nerves and found all normal. I did not discuss ALS with him as this was before I noticed twitching so I was not worried about this yet.
- Had physiotherapy and in July 2024 the physio also tested my nerves, reflexes (including for pathological reflexes) and strength, and found all normal.
- Without referral, I booked an EMG in Italy. The neurologist who operated the machine was puzzled but still tested some "random" muscles where I had had some twitches. These include biceps (both sides), trapezius (both sides), some muscles in my right hand, right quadriceps. No abnormal activity or response was detected in any of those.
Currently I have been given amitriptyline for the weird pain. Initially it seemed to help, but then the pain increased again. None of the doctors I spoke to has been able to provide a diagnosis.
Because these symptoms are spreading and progressing I am becoming quite worried and anxious, even more so because I noted some overlap between some of my symptoms and those reported by people affected by ALS on this and other forums. I am aware that pain points away from ALS, but I also read various academic papers pointing out that pain is not actually uncommon, and is often an overlooked symptom of the disease.
I have another GP appointment this week, and I plan mention ALS and to possibly be referred to a specialist.
I would hugely appreciate any feedback you may be able to provide.
Thanks very much in advance.
I am 39yo male and since January 2024 I have been having some weird symptoms:
It started with "globus sensation" in the right hand side of my throat. Initially no pain, difficulties swallowing or speaking. The doctors who examined me (see below) noticed hoarseness, however my wife does not think that this is new for me (I also had not noticed).
In May I started having a weird intermittent pain in mi right jaw, teeth, ear and throat, and shortly after it spread to my right shoulder all the way down to my right hand (top of my fingers). When the pain in my face area (ears, jaw) is strongest, some spots are actually quite tender to the touch.
Currently (July 2024) I have the same weird pain, coming and going, on both the right and left sides of my body (ears, teeth, shoulders, arms, hands, legs, feet), but predominantly still on the right. The globus sensation remains, but now oscillates between left and right. Sometimes is stronger than other times. Pain comes in waves that may last just one second or a couple of minutes. Sometimes pain remains for longer, but it is very mild. Sometimes it feels like burning (particularly in my shoulders), other times more like stabbing pain.
For a month or two between June and July 2024, I had distinct muscle pain in the right hand side of my upper back, between the shoulder blades. Felt like a contracture or other muscle injury. This has now improved substantially, but there is a spot next to my spine which remains tender to the touch.
As of 1 month ago, I started noticing twitching. This is widespread and it happens in every limb, in my back, neck and sometimes my face. It is mostly sporadic: only one or two small twitches, although there have been a couple cases in which one muscle twitched more regularly (say 10-20 times a day) for a few days. This was the case for the muscle that moves my right thumb and one muscle in my neck. Twitching seems to be more frequent in the morning.
I do not have weakness and did not notice a change in the level of my coordination (I am quite clumsy as a baseline). However, in recent weeks (admittedly after becoming worried about ALS), I have developed a strange feeling in my lips and the region around my mouth. It's not pain nor tingling nor numbness, more like an awareness that this part of my body exists. Similar to restlessness. Sometimes, it makes me feel like I struggle to spell out words, as if those muscles were lacking coordination, but my wife says she hasn't noticed any changes in the way I speak.
I have done many tests, some of them privately in my home country (Italy) given that support from the NHS in the UK (where I live) is not great. Here is a list and outcomes:
- Full blood works in March 24. All normal except for severe vitamin D deficiency (taking supplements)
- Chest X-ray in April 24. Normal
- Various ENT visits and laryngoscopies. All normal except for mild signs of GERD (which I knew I had). I have been prescribed treatment with PPI inhibitors etc, but no help. One ENT said that the muscles down my throat look tensed.
- CT scan of the chest. All normal.
- MRI of the neck, brain and whole spine. All normal except for some mild cervical protrusions that should be asymptomatic.
- Seen general practctitioncer doctors (many times). One did test my nerves and found all normal.
- Seen a neurologist (I don't think ALS specialist) in June 2024. He also tested my nerves and found all normal. I did not discuss ALS with him as this was before I noticed twitching so I was not worried about this yet.
- Had physiotherapy and in July 2024 the physio also tested my nerves, reflexes (including for pathological reflexes) and strength, and found all normal.
- Without referral, I booked an EMG in Italy. The neurologist who operated the machine was puzzled but still tested some "random" muscles where I had had some twitches. These include biceps (both sides), trapezius (both sides), some muscles in my right hand, right quadriceps. No abnormal activity or response was detected in any of those.
Currently I have been given amitriptyline for the weird pain. Initially it seemed to help, but then the pain increased again. None of the doctors I spoke to has been able to provide a diagnosis.
Because these symptoms are spreading and progressing I am becoming quite worried and anxious, even more so because I noted some overlap between some of my symptoms and those reported by people affected by ALS on this and other forums. I am aware that pain points away from ALS, but I also read various academic papers pointing out that pain is not actually uncommon, and is often an overlooked symptom of the disease.
I have another GP appointment this week, and I plan mention ALS and to possibly be referred to a specialist.
I would hugely appreciate any feedback you may be able to provide.
Thanks very much in advance.
