edwardstcpowell
New member
- Joined
- Oct 26, 2024
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
Hi everyone,
I am 29 years old, living in the West Midlands of the UK, and I have a diagnosis of autism (High functioning AS), and Mild ADHD (medicated). in April 2024 , I started to get these temple region headaches, that are persistent constantly since that time. And also since April 2024 I have had frequent periods of feeling nauseous, and having a lack of appetite on & off. On 17th October 2024, I woke up one morning and I had severe spinal pain, and a severe neck ache. That I originally thought was something worrying like cancer. So the doctor sent me for an MRI scan of my neck. Which at the time was my 2nd MRI scan which I had in late November 2024. As the first MRI scan was on the top of my head and it showed no evidence of any lesions whatsoever however there was some new Coast thickening that the examining MRI specialist advised the GP to exclude sinusitis, and also some thickening of the mastoids which were partially filled at the time in Late August 2024. Since early December 2024, for the last couple of months I now also have consistent tongue fasciculations, that look like pulses in the tongue’s flesh or tissue, or like ripples, my tongue is slightly curved over to the right hand side which is also interesting because my right side of my body is the most affected at the minute overall
My second MRI which I mentioned above was on my neck in late November 2024, the results were “”Clinical History ; nerve sensations down arms and legs, pulsing under the skin, tongue weakness & slight curvature, emotional changes & changes in appetite, slight atrophy of the hand then at muscles, odd sensations, patient has been referred for NCS tests. Some faciculations in fingers. neck pain. Ongoing over a few months. MRI on cervical spine area — Normal craniovertebral junction. There is minor localised early disc degeneration at C5/6 associated with a modest disc bulge but no evidence of any focal disc protrusion. No compromise of the thecal sac or cord. No evidence of nerve root compression. At C6/7 there is a tiny right paracentral disc bulge but no compromise to the exit foramina or nerve root. The rest of the study is normal. Minor spondylosis as detailed above but no significant nerve root compression””
_______________________________________________
Then developing after November 2024, have been experiencing pulses under the skin, and sensations down my arms back and what appear to be twitches or fasciculations, in my toes and fingers are my thumbs, they often appear in clusters, although slightly intermittent they do happen at the same time and don’t follow any unpredictable pattern. I have also been experiencing an appetite loss, and my eating and drinking have been very on & off. I’ve been referred to Birmingham City neurological treatment Centre, or an NCS test to be performed.
I have been noticing some discomfort in my legs and arms in which they ache a lot during the day, and I’ve also noticed that my thumbs are less flexible and they are sort of twisting backwards to face flat and right angle to my fingers on each hand, an overtime I feel they’re getting less Mobile and they have been very reluctant to move in circles a lot in a kind of motion, as if they’re quite stiff or tight. I have also been noticing this similar phenomenon or symptoms in my feet and ankle joints, which I’m fine to get very difficult to move in a circular movement / fashion.
Shortly after I had my neck MRI which was my 2nd one in late November 2024, in between the period of August 2024 and November 2024, my Creatine serum Kinase levels were around 198 per litre, which apparently was right on the borderline — the highest number of the normal range and any higher with that was at the time considered to be abnormal. And then when I was tested again at the same time, I had my MRI scan that I mentioned above in November 2024, the Creatine serum Kinase levels were around 214 units per litre. Also my GP and Dr surgery are not sure about this second aspect of this part of my message here, it is related to all or not, but after May 2024, there was a vast increase in the number of my lymphocytes, and since May 2024 as well there has been a sharp decrease and then fairly gradual of my neutrophil levels, and also finally a minor gradual decrease in my albumin levels. The doctors originally suspected something like leukaemia, as a precaution but then my red and white blood cell counts were completely normal though.
I haven’t had signs of any weakness to any major degree although I mentioned above I do have muscle issues in which they are less mobile and they have been fairly consistent although I’m worried that will change at some point as the doctors are very baffled as if I do have ALS without having further tests until I get the results through, they seem to think that it may be if it’s true it may be a very slow progression / medical case, and may also possibly be spinal onset. I have also been no changes in my emotions in which I am more emotional, but not to the level of the possible ALS similar symptom that I have seen on the web, however I have found that I can be different some days in which I can either be quite discontent and angry or upset someway for no reason, and other days I can feel either normal or I can feel a bit sad or down for no reason like a bit depressed. The doctors also suspected Huntingtons but they think this is unlikely.
I’m also finding bending down in a squatting position very difficult, and I find I’m more clumsy than normal in recent months and I tend to drop things like my phone on the floor, as it feels like sometimes my muscles in my hand give out or relax, and they just let go of objects in my hands. The MRI scan which was the second one mentioned above conducted in November 2024, at the time showed no signs of nerve degeneration, or degradation of the spine’s tissues, although I have been trying to request from my GP if I can have a 3rd one possibly in February or March 2025 ; to check to see if that is still the case, because of my newly developed symptoms between my last one and this possible new 3rd scan. I am also waiting to hear if there are any problems with the NCS study, if an EMG is practical.
I have also been experiencing difficulties with my speech, And the articulation, but only mainly in a spoken form, and in not in a written form of expression, as I often slur my words, vowels or phonemes, and I have also been a lot more forgetful, as well. I have noticed no changes whatsoever, though in sensation such as touch, smell, taste, eyesight or hearing
I am 29 years old, living in the West Midlands of the UK, and I have a diagnosis of autism (High functioning AS), and Mild ADHD (medicated). in April 2024 , I started to get these temple region headaches, that are persistent constantly since that time. And also since April 2024 I have had frequent periods of feeling nauseous, and having a lack of appetite on & off. On 17th October 2024, I woke up one morning and I had severe spinal pain, and a severe neck ache. That I originally thought was something worrying like cancer. So the doctor sent me for an MRI scan of my neck. Which at the time was my 2nd MRI scan which I had in late November 2024. As the first MRI scan was on the top of my head and it showed no evidence of any lesions whatsoever however there was some new Coast thickening that the examining MRI specialist advised the GP to exclude sinusitis, and also some thickening of the mastoids which were partially filled at the time in Late August 2024. Since early December 2024, for the last couple of months I now also have consistent tongue fasciculations, that look like pulses in the tongue’s flesh or tissue, or like ripples, my tongue is slightly curved over to the right hand side which is also interesting because my right side of my body is the most affected at the minute overall
My second MRI which I mentioned above was on my neck in late November 2024, the results were “”Clinical History ; nerve sensations down arms and legs, pulsing under the skin, tongue weakness & slight curvature, emotional changes & changes in appetite, slight atrophy of the hand then at muscles, odd sensations, patient has been referred for NCS tests. Some faciculations in fingers. neck pain. Ongoing over a few months. MRI on cervical spine area — Normal craniovertebral junction. There is minor localised early disc degeneration at C5/6 associated with a modest disc bulge but no evidence of any focal disc protrusion. No compromise of the thecal sac or cord. No evidence of nerve root compression. At C6/7 there is a tiny right paracentral disc bulge but no compromise to the exit foramina or nerve root. The rest of the study is normal. Minor spondylosis as detailed above but no significant nerve root compression””
_______________________________________________
Then developing after November 2024, have been experiencing pulses under the skin, and sensations down my arms back and what appear to be twitches or fasciculations, in my toes and fingers are my thumbs, they often appear in clusters, although slightly intermittent they do happen at the same time and don’t follow any unpredictable pattern. I have also been experiencing an appetite loss, and my eating and drinking have been very on & off. I’ve been referred to Birmingham City neurological treatment Centre, or an NCS test to be performed.
I have been noticing some discomfort in my legs and arms in which they ache a lot during the day, and I’ve also noticed that my thumbs are less flexible and they are sort of twisting backwards to face flat and right angle to my fingers on each hand, an overtime I feel they’re getting less Mobile and they have been very reluctant to move in circles a lot in a kind of motion, as if they’re quite stiff or tight. I have also been noticing this similar phenomenon or symptoms in my feet and ankle joints, which I’m fine to get very difficult to move in a circular movement / fashion.
Shortly after I had my neck MRI which was my 2nd one in late November 2024, in between the period of August 2024 and November 2024, my Creatine serum Kinase levels were around 198 per litre, which apparently was right on the borderline — the highest number of the normal range and any higher with that was at the time considered to be abnormal. And then when I was tested again at the same time, I had my MRI scan that I mentioned above in November 2024, the Creatine serum Kinase levels were around 214 units per litre. Also my GP and Dr surgery are not sure about this second aspect of this part of my message here, it is related to all or not, but after May 2024, there was a vast increase in the number of my lymphocytes, and since May 2024 as well there has been a sharp decrease and then fairly gradual of my neutrophil levels, and also finally a minor gradual decrease in my albumin levels. The doctors originally suspected something like leukaemia, as a precaution but then my red and white blood cell counts were completely normal though.
I haven’t had signs of any weakness to any major degree although I mentioned above I do have muscle issues in which they are less mobile and they have been fairly consistent although I’m worried that will change at some point as the doctors are very baffled as if I do have ALS without having further tests until I get the results through, they seem to think that it may be if it’s true it may be a very slow progression / medical case, and may also possibly be spinal onset. I have also been no changes in my emotions in which I am more emotional, but not to the level of the possible ALS similar symptom that I have seen on the web, however I have found that I can be different some days in which I can either be quite discontent and angry or upset someway for no reason, and other days I can feel either normal or I can feel a bit sad or down for no reason like a bit depressed. The doctors also suspected Huntingtons but they think this is unlikely.
I’m also finding bending down in a squatting position very difficult, and I find I’m more clumsy than normal in recent months and I tend to drop things like my phone on the floor, as it feels like sometimes my muscles in my hand give out or relax, and they just let go of objects in my hands. The MRI scan which was the second one mentioned above conducted in November 2024, at the time showed no signs of nerve degeneration, or degradation of the spine’s tissues, although I have been trying to request from my GP if I can have a 3rd one possibly in February or March 2025 ; to check to see if that is still the case, because of my newly developed symptoms between my last one and this possible new 3rd scan. I am also waiting to hear if there are any problems with the NCS study, if an EMG is practical.
I have also been experiencing difficulties with my speech, And the articulation, but only mainly in a spoken form, and in not in a written form of expression, as I often slur my words, vowels or phonemes, and I have also been a lot more forgetful, as well. I have noticed no changes whatsoever, though in sensation such as touch, smell, taste, eyesight or hearing
