Studavey
Member
- Joined
- Nov 2, 2017
- Messages
- 12
- Reason
- Learn about ALS
- Country
- UK
- State
- UK
- City
- Bristol
Dear all
I'm in a really tough spot and have been for about 3 months. Please can I run my symptoms by you to see if anyone can relate to my condition and progress.
I have felt a bit off since the beginning of the year like a growing fatigue, but I put this down to having a 1 year old (now nearly 2). I went to the docs however as something wasn't quite right. I had low neutrophils, which after several blood tests the doc decided was just normal for me.
I then had a funny turn while returning back from a holiday, felt like a mini stroke, which then happened a few more times in the following months. Went to the docs, again they weren't sure but said it may have been a transient ischemic attack. I am 32 years old by the way.
Cone June, and in the swimming pool I felt breathless, not out of breath, just like there wasn't any air. Still not bothering about all of the above at this stage.
Then In mid July I begin to have this weird internal tremor when sitting st my desk st work or during a posture. Throughout my body. Sometimes visible. When I move my fingers as well they then take an age to relax, twitching about all over the place. I tried to exercise this out over the following weeks and doc prescribed me with propranalol. However symptoms got worse. At this stage I also noticed the veins on my hands were alot more prominent than they had been before. At this stage I am thinking weird heart issue.
I then get out the pool one day and I have another funny turn, then develop these mad twitches. I notice that I am looking alot thinner around my chest area bizarrely. The funny turns are caused by shortness of breath. I weigh myself and in the space of 8 weeks o have lost nearly one stone of weight. Now I am worried.
Over the next month I presented to a&e three times with exercise induced breathing issues. During this period I developed first calf twitches which then progressed body wide. I was referred to neurology who through the book at me. Ever scan and blood test imaginable plus lumbar puncture. I passed with ease neurologi so strength tests. I had an NCV which was normal and an EMG tested 4 limbs, one spinal muscle and my stomach. Neurophysio didn't want to test my neck or ribs despite me asking. She noted 'one chronic neurogenic unit' I think in my left thumb muscle but didn't think it was important and deemed the test normal. At this stage no clinical weakness. Neuro noted possible atrophy in right scapula and on right hand but second neurologist wrote this off.
Fast forward two months and i notice the muscle loss continuing in my hands and feet, my right pectoral, neck and and around my knees. To be honest with you, it's relentless and is starting to interfere with my day to day. Drilling, storing the te, lifting The kettle or carrying my young son up our stairs are now exceptionally tough. My face has also lost a ton of muscle and feels stiff, it also sometimes feels like it is crawling. I was waking up for a period of 3 weeks with dead arms but they are permanently stiff Now, not dead, different feeling, tough to explain. There are big holes above my elbows now also. The twitching has taken on a new level, my breathing has gotten worse and my swallowing is poor. I attribute this to my neck and chest wasting.
Due to my muscle loss and breathing issues exercise has become very tough, I try to push through it but when I do the following two days are a write off. No matter how I exercise I cannot rebuild the muscle I have lost, in fact i feel it exacerbates it. I have managed to put back on half a stone from s calorie rich diet and protein shake but it is not building the areas I have lost muscle. I have lost 8 cm in my calves. My grip in my dominant hand has now weakened and stiffened, hands and wrists look skeletal.
I was extremely fit and athletic before all this kicked off, the changes in my body have been unbelievable. I'm terrified this is ALS.
Can anyone offer any guidance or support, or alternative causes?
I'm happy to provide pictures of atrophied areas if interested. I have been kind of keeping a photo diary of progress.
I have had no help from the neurologists I saw, after first emg they kind of wrote me off with something called a functional neurological disorder. However the twitching and progressive muscle loss don't fit. I'm really lost.
I'm in a really tough spot and have been for about 3 months. Please can I run my symptoms by you to see if anyone can relate to my condition and progress.
I have felt a bit off since the beginning of the year like a growing fatigue, but I put this down to having a 1 year old (now nearly 2). I went to the docs however as something wasn't quite right. I had low neutrophils, which after several blood tests the doc decided was just normal for me.
I then had a funny turn while returning back from a holiday, felt like a mini stroke, which then happened a few more times in the following months. Went to the docs, again they weren't sure but said it may have been a transient ischemic attack. I am 32 years old by the way.
Cone June, and in the swimming pool I felt breathless, not out of breath, just like there wasn't any air. Still not bothering about all of the above at this stage.
Then In mid July I begin to have this weird internal tremor when sitting st my desk st work or during a posture. Throughout my body. Sometimes visible. When I move my fingers as well they then take an age to relax, twitching about all over the place. I tried to exercise this out over the following weeks and doc prescribed me with propranalol. However symptoms got worse. At this stage I also noticed the veins on my hands were alot more prominent than they had been before. At this stage I am thinking weird heart issue.
I then get out the pool one day and I have another funny turn, then develop these mad twitches. I notice that I am looking alot thinner around my chest area bizarrely. The funny turns are caused by shortness of breath. I weigh myself and in the space of 8 weeks o have lost nearly one stone of weight. Now I am worried.
Over the next month I presented to a&e three times with exercise induced breathing issues. During this period I developed first calf twitches which then progressed body wide. I was referred to neurology who through the book at me. Ever scan and blood test imaginable plus lumbar puncture. I passed with ease neurologi so strength tests. I had an NCV which was normal and an EMG tested 4 limbs, one spinal muscle and my stomach. Neurophysio didn't want to test my neck or ribs despite me asking. She noted 'one chronic neurogenic unit' I think in my left thumb muscle but didn't think it was important and deemed the test normal. At this stage no clinical weakness. Neuro noted possible atrophy in right scapula and on right hand but second neurologist wrote this off.
Fast forward two months and i notice the muscle loss continuing in my hands and feet, my right pectoral, neck and and around my knees. To be honest with you, it's relentless and is starting to interfere with my day to day. Drilling, storing the te, lifting The kettle or carrying my young son up our stairs are now exceptionally tough. My face has also lost a ton of muscle and feels stiff, it also sometimes feels like it is crawling. I was waking up for a period of 3 weeks with dead arms but they are permanently stiff Now, not dead, different feeling, tough to explain. There are big holes above my elbows now also. The twitching has taken on a new level, my breathing has gotten worse and my swallowing is poor. I attribute this to my neck and chest wasting.
Due to my muscle loss and breathing issues exercise has become very tough, I try to push through it but when I do the following two days are a write off. No matter how I exercise I cannot rebuild the muscle I have lost, in fact i feel it exacerbates it. I have managed to put back on half a stone from s calorie rich diet and protein shake but it is not building the areas I have lost muscle. I have lost 8 cm in my calves. My grip in my dominant hand has now weakened and stiffened, hands and wrists look skeletal.
I was extremely fit and athletic before all this kicked off, the changes in my body have been unbelievable. I'm terrified this is ALS.
Can anyone offer any guidance or support, or alternative causes?
I'm happy to provide pictures of atrophied areas if interested. I have been kind of keeping a photo diary of progress.
I have had no help from the neurologists I saw, after first emg they kind of wrote me off with something called a functional neurological disorder. However the twitching and progressive muscle loss don't fit. I'm really lost.
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