Monty1973
Member
- Joined
- May 29, 2016
- Messages
- 11
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
- City
- Eastbourne
I am a extremely complex case, so I do not know whether anyone can help me. In July this year, I had a acute and rapid onset of muscle weakness and muscle atrophy all over my body. All areas of my body are affected, including, my face, neck, chest, stomach, limbs and even buttocks. The only way I can describe it is if my body has suddenly become flaccid and floppy. The subcateous fat underneath the skin has completely disappeared. The onset of these symptoms were also accompanied by an inability to regulate my body temperature (increased temperature, but no sign of infection) and cognitive problems, such as episodes of delirium, confusion, mutism and memory loss.
Not long after I was taken into accident and emergency but discharged after. basic bloods, but no neurological examination. About several days later I started having problems moving my eyes from side to side and my wife noticed that my pupils had dilated to pin prices. After having extreme muscle weakness that caused me to have a fall, I was rushed into hospital.
It was a very frightening time. as I was even taken into the Resus Department, because my blood pressure was so elevated. The hospital doctors kept me in for two weeks, as at the time they thought that I either had an acute dymylination disorder, such as osmodic dymylination syndrome or an acute encephalopathy. Whilst as an inpatient I had an Mri of the brain and spine with contrast, a lumbar puncture and an emg/nerve conduction study. The Mri was reported as normal, apart from an herniated disc in C4/C5, and the emg/nerve conduction study showed no abnormalities . However, the lumbar puncture revealed a slightly elevated protein in the CSF and a blood test showed high pro lactin. I was discharged after two weeks as I was deemed medically fit enough, but I was to be followed up as an outpatient by neurology.
However, during my stay I developed wrist drop, a clawed hand and something called belly dancer's dyskinensia, which causes the diaphram to flutter. About a week after discharge. I did see a neurologist, who noticed bilateral facial weakness in my face and increased tone in the lower limbs. He has suggested the possibility of Hereditary Spastic Paresis, Neuro Sjogrens syndrome or Neuroanthrocystosis.
I am due to have another Emg/nerve conduction study in two weeks time and a somato sensory evoked potentials test not long after that. What though is starting to worry me is that as well as all the symptoms I have listed I also have widespread fasiculations all over my body and mycolonic jetks.
To provide a bit of context, I am a 49 year old male. I was previously on this forum in 2016, but back then was diagnosed with benign fasiculation disorder. I have had chronic neurological problems since November 2020, particularly cognitive problems, walking and mobility problems and intermittent ptosis of the eyelids. I have over the years been worked up for Mysathenia Gravis, Lambert Eaton Syndrome, Mells, which is a mitochondrial disease and even Prion disease at one point. I have been informed that I definitely have an underlying neurological organic disease. But what worries me is this rapid escalation of symptoms since July.
The only thing I can think of that the acute escalation of symptoms occurred not long after a keppra infusion for intractable seizures, as i have epileptic seizures. For two days after the infusion, I could not even walk or ambulate properly and I was having derilum episodes where I did no even recognise my wife. I believe my creatine kinase at that time was recorded as 1300, which is markedly elevated. Stupidly, because I could find no answers to my symptoms from the doctors over the past couple of years, I took supplements in great quantities, such as l-arginine, dicholracteate acid, NAC, in an attempt to feel better. So I do not know whether this has caused a toxic affect on my brain and has led to an acute onset form of some kind of disease process with similar symptoms to ALS. I have read some reports about toxic agents such as lead causing a similar syndrome to ALS. I just wondered what your thoughts were about whether I have some kind of ALS syndrome.
Not long after I was taken into accident and emergency but discharged after. basic bloods, but no neurological examination. About several days later I started having problems moving my eyes from side to side and my wife noticed that my pupils had dilated to pin prices. After having extreme muscle weakness that caused me to have a fall, I was rushed into hospital.
It was a very frightening time. as I was even taken into the Resus Department, because my blood pressure was so elevated. The hospital doctors kept me in for two weeks, as at the time they thought that I either had an acute dymylination disorder, such as osmodic dymylination syndrome or an acute encephalopathy. Whilst as an inpatient I had an Mri of the brain and spine with contrast, a lumbar puncture and an emg/nerve conduction study. The Mri was reported as normal, apart from an herniated disc in C4/C5, and the emg/nerve conduction study showed no abnormalities . However, the lumbar puncture revealed a slightly elevated protein in the CSF and a blood test showed high pro lactin. I was discharged after two weeks as I was deemed medically fit enough, but I was to be followed up as an outpatient by neurology.
However, during my stay I developed wrist drop, a clawed hand and something called belly dancer's dyskinensia, which causes the diaphram to flutter. About a week after discharge. I did see a neurologist, who noticed bilateral facial weakness in my face and increased tone in the lower limbs. He has suggested the possibility of Hereditary Spastic Paresis, Neuro Sjogrens syndrome or Neuroanthrocystosis.
I am due to have another Emg/nerve conduction study in two weeks time and a somato sensory evoked potentials test not long after that. What though is starting to worry me is that as well as all the symptoms I have listed I also have widespread fasiculations all over my body and mycolonic jetks.
To provide a bit of context, I am a 49 year old male. I was previously on this forum in 2016, but back then was diagnosed with benign fasiculation disorder. I have had chronic neurological problems since November 2020, particularly cognitive problems, walking and mobility problems and intermittent ptosis of the eyelids. I have over the years been worked up for Mysathenia Gravis, Lambert Eaton Syndrome, Mells, which is a mitochondrial disease and even Prion disease at one point. I have been informed that I definitely have an underlying neurological organic disease. But what worries me is this rapid escalation of symptoms since July.
The only thing I can think of that the acute escalation of symptoms occurred not long after a keppra infusion for intractable seizures, as i have epileptic seizures. For two days after the infusion, I could not even walk or ambulate properly and I was having derilum episodes where I did no even recognise my wife. I believe my creatine kinase at that time was recorded as 1300, which is markedly elevated. Stupidly, because I could find no answers to my symptoms from the doctors over the past couple of years, I took supplements in great quantities, such as l-arginine, dicholracteate acid, NAC, in an attempt to feel better. So I do not know whether this has caused a toxic affect on my brain and has led to an acute onset form of some kind of disease process with similar symptoms to ALS. I have read some reports about toxic agents such as lead causing a similar syndrome to ALS. I just wondered what your thoughts were about whether I have some kind of ALS syndrome.
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