nick09
New member
- Joined
- Aug 1, 2024
- Messages
- 1
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
I'm a 24 (25 in sept) African male and suspect I have a neurological issue with ALS being a possibility
Background: I've had migraines and tension headaches since I was little (12 yo) for which I went on medication from 2018 - 2020 (Amitriptyline + indomethacin + prednisolone) and previously had fasciculations for an extended period of time (13 - 16 yo). They mostly went away when I was in university. They came back last year in July, but I was working two jobs as a programmer and didn't pay much mind to them. I was stressed and had experienced them before, so didn't see it as much of an issue.
I moved to the UK in January for my MSc studies, still dealing with the fasciculations. They were relatively mild and not a hindrance; but it went downhill after I had a panic attack out of nowhere in March that had me dealing with a spiked blood pressure. The panic attack exacerbated my underlying issues, and I started having constant tension headaches and frequent migraines again. I discovered in real time that the UKs NHS system is extremely slow and frustrating and not at all interested in preventive care, because after I saw my worsening symptoms, I tried to get ahead of the issue and get medical care. GP appointments took weeks and A&E didn't attend to me. When I'd talk to the GP or a doctor in A&E they'd simply chalk it up to stress and anxiety. I bought their explanation for a while, and applied their measures to manage stress. The thing is, there were no real stressors in my life: I'm not struggling with school and my finances are relatively fine, no family or relationship issues and I was in good physical health (at least then). The GP said it could be an underlying stressor that I simply am not conscious of.
I went back on amitriptyline on May 1st after passing out in the A&E. At that point, I was convinced that my symptoms weren't simply anxiety. I had no real reason to be anxious and I was also adhering to all the stress management advice I was given. I tried to communicate such to my GP, but was repeatedly brushed off. Anxiety seemed to be their silver bullet explanation for all my physical symptoms. I came off the Amitriptyline because I had a UTI and subsequent Kidney infection I had to treat. I noticed then that my migraines and tension headaches seem to have stabilised, but my fasciculations where worsening. I pointed this out to my GP, I sure you all can guess what was suggested as the underlying cause.
I began to notice I was feeling quite fatigued and struggling with physical exercises and tasks that I could perform with ease less than a year ago. I couldn't do more than 6 minutes of HIIT without feeling ready to pass out (my previous benchmark was 30 minutes) or jog for more than 15 mins (previous max time 1 hr, avg time 45 minutes). I made sure to point these to out my GP, just to make sure it was on record.
On June 26, I woke up and my right arm was in pain and felt weak and "funny". I initially though I slept on it funny, but that was unlikely, since I do not sleep on my sides. I took some painkillers and used ice on the arm while taking it easy for the rest of the day. The next day, June 27th, I was doing some light chores and taking out the trash, and while holding on to a rubbish bag, my right arm started trembling and the bag seemed to multiply in weight. It was a disturbing experience. I went to the A&E and the doctor simply said I may have a deficiency or trapped nerve. No tests, just a guess.
Not an issue, I reached out to my GP the next day to inform them of the results from the A&E visit. Blood tests were ordered, only deficiency was Vit D, so I've been on 2000iu a day for a month to still worsening symptoms. Recently got doubled to 4000iu/d.
Since then, I've multiple appointments with no real progress, and as for my symptoms:
- My right arm remains in pain and weak, with the pain starting from my shoulder and radiating downwards. Felt particularly in my biceps too. My fingers have also been getting stiffer (typing this is taking a lot longer than it normally would). I have also begun to notice differences in between my right and left arm (muscle tone, texture, density, size still feels a bit similar)
- My right leg started feeling numb two weeks after my right arm pain started. On Aug 4, I actually froze up on my while I was walking. I had to sort of limp+drag myself to the side and wait for things to get back to normal
- On August 3 My left arm started experiencing weakness in a slightly different starting pattern from my right arm. The weak feeling is even more pronounced
- My fasciculations have gotten a lot worse. Increasing in frequency over time and now capable of waking me up from sleep (which has happened twice in the past 5 days). Areas with the most frequency are the weak or numb areas, (biceps, shoulders, thighs, calves and fingers); but the fasciculations affect my entire body
- I've had ongoing tinnitus for 3 months with no real issues observed in my ear, so I've been referred to an ENT (have to wait till at least Sept 19 before I can even expect a call)
- I lost 4 kg in 12 days (no exercise, just very poor appetite, which the GP says cannot explain the weight loss)
- Started having fasciculations on my tongue and throat about 2 weeks ago
- Paresthesia
A single GP seems to be taking me seriously now, and is considering a referral to a neuro (after months of me asking). She did some routine power and reflex tests and said most (but not all) were okay. She wouldn't specify which was abnormal.
I having been keeping my uncle (who is a neuropsychiatrist) up to date with my symptoms for a better part of a month, and just recently, after listening to my updates, he finally floated the idea of a neurological complication (Neuropathy, BFS or ALS). He was being intentionally vague, but at least he was straight with me on the possibilities, even if it took over a month of keeping him up to date.
So, that's where am at right now. Frustrated and can't seem to get access to the care I require because of NHS bureaucracy and GP aloofness. I haven't even gotten treatment for my arm pain, which has been going on for a while now. Always just paracetamol or Ibuprofen. Not even an ultrasound to see why it persists and worsens even after a month+ of constant self-care, painkillers and massages.
I'm frustrated, tired and defeated, because despite my best efforts, the medical care that I have sought out has either been minimally rendered or completely unavailable. It's a far cry from my state of mind when I first moved to the UK. My symptoms are worsening and the doctors aren't taking it serious. So I remain in pain and constantly fatigued.
I don't really know what to do at this point.
Background: I've had migraines and tension headaches since I was little (12 yo) for which I went on medication from 2018 - 2020 (Amitriptyline + indomethacin + prednisolone) and previously had fasciculations for an extended period of time (13 - 16 yo). They mostly went away when I was in university. They came back last year in July, but I was working two jobs as a programmer and didn't pay much mind to them. I was stressed and had experienced them before, so didn't see it as much of an issue.
I moved to the UK in January for my MSc studies, still dealing with the fasciculations. They were relatively mild and not a hindrance; but it went downhill after I had a panic attack out of nowhere in March that had me dealing with a spiked blood pressure. The panic attack exacerbated my underlying issues, and I started having constant tension headaches and frequent migraines again. I discovered in real time that the UKs NHS system is extremely slow and frustrating and not at all interested in preventive care, because after I saw my worsening symptoms, I tried to get ahead of the issue and get medical care. GP appointments took weeks and A&E didn't attend to me. When I'd talk to the GP or a doctor in A&E they'd simply chalk it up to stress and anxiety. I bought their explanation for a while, and applied their measures to manage stress. The thing is, there were no real stressors in my life: I'm not struggling with school and my finances are relatively fine, no family or relationship issues and I was in good physical health (at least then). The GP said it could be an underlying stressor that I simply am not conscious of.
I went back on amitriptyline on May 1st after passing out in the A&E. At that point, I was convinced that my symptoms weren't simply anxiety. I had no real reason to be anxious and I was also adhering to all the stress management advice I was given. I tried to communicate such to my GP, but was repeatedly brushed off. Anxiety seemed to be their silver bullet explanation for all my physical symptoms. I came off the Amitriptyline because I had a UTI and subsequent Kidney infection I had to treat. I noticed then that my migraines and tension headaches seem to have stabilised, but my fasciculations where worsening. I pointed this out to my GP, I sure you all can guess what was suggested as the underlying cause.
I began to notice I was feeling quite fatigued and struggling with physical exercises and tasks that I could perform with ease less than a year ago. I couldn't do more than 6 minutes of HIIT without feeling ready to pass out (my previous benchmark was 30 minutes) or jog for more than 15 mins (previous max time 1 hr, avg time 45 minutes). I made sure to point these to out my GP, just to make sure it was on record.
On June 26, I woke up and my right arm was in pain and felt weak and "funny". I initially though I slept on it funny, but that was unlikely, since I do not sleep on my sides. I took some painkillers and used ice on the arm while taking it easy for the rest of the day. The next day, June 27th, I was doing some light chores and taking out the trash, and while holding on to a rubbish bag, my right arm started trembling and the bag seemed to multiply in weight. It was a disturbing experience. I went to the A&E and the doctor simply said I may have a deficiency or trapped nerve. No tests, just a guess.
Not an issue, I reached out to my GP the next day to inform them of the results from the A&E visit. Blood tests were ordered, only deficiency was Vit D, so I've been on 2000iu a day for a month to still worsening symptoms. Recently got doubled to 4000iu/d.
Since then, I've multiple appointments with no real progress, and as for my symptoms:
- My right arm remains in pain and weak, with the pain starting from my shoulder and radiating downwards. Felt particularly in my biceps too. My fingers have also been getting stiffer (typing this is taking a lot longer than it normally would). I have also begun to notice differences in between my right and left arm (muscle tone, texture, density, size still feels a bit similar)
- My right leg started feeling numb two weeks after my right arm pain started. On Aug 4, I actually froze up on my while I was walking. I had to sort of limp+drag myself to the side and wait for things to get back to normal
- On August 3 My left arm started experiencing weakness in a slightly different starting pattern from my right arm. The weak feeling is even more pronounced
- My fasciculations have gotten a lot worse. Increasing in frequency over time and now capable of waking me up from sleep (which has happened twice in the past 5 days). Areas with the most frequency are the weak or numb areas, (biceps, shoulders, thighs, calves and fingers); but the fasciculations affect my entire body
- I've had ongoing tinnitus for 3 months with no real issues observed in my ear, so I've been referred to an ENT (have to wait till at least Sept 19 before I can even expect a call)
- I lost 4 kg in 12 days (no exercise, just very poor appetite, which the GP says cannot explain the weight loss)
- Started having fasciculations on my tongue and throat about 2 weeks ago
- Paresthesia
A single GP seems to be taking me seriously now, and is considering a referral to a neuro (after months of me asking). She did some routine power and reflex tests and said most (but not all) were okay. She wouldn't specify which was abnormal.
I having been keeping my uncle (who is a neuropsychiatrist) up to date with my symptoms for a better part of a month, and just recently, after listening to my updates, he finally floated the idea of a neurological complication (Neuropathy, BFS or ALS). He was being intentionally vague, but at least he was straight with me on the possibilities, even if it took over a month of keeping him up to date.
So, that's where am at right now. Frustrated and can't seem to get access to the care I require because of NHS bureaucracy and GP aloofness. I haven't even gotten treatment for my arm pain, which has been going on for a while now. Always just paracetamol or Ibuprofen. Not even an ultrasound to see why it persists and worsens even after a month+ of constant self-care, painkillers and massages.
I'm frustrated, tired and defeated, because despite my best efforts, the medical care that I have sought out has either been minimally rendered or completely unavailable. It's a far cry from my state of mind when I first moved to the UK. My symptoms are worsening and the doctors aren't taking it serious. So I remain in pain and constantly fatigued.
I don't really know what to do at this point.
