Zeuzz
New member
- Joined
- Nov 15, 2022
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- AU
- State
- VI
- City
- Melbourne
Hi
I’m a 38 year old caucasian male from Australia, over the last 7 months my life has been turned upside down..
it started with waking up one morning with a pain in my groin.. I couldn’t pinpoint it exactly though it was around my right testicle/spermatic cord.
After a week or so I had incredibly sharp feeling in my urethra after I urinated.. like pins stabbing though it.
I started feeling extremely fatigued, in a way I had never experienced in my life.
I had std test after std test for months.. blood tests.. everything.
I developed pain in my anus within a matter of weeks and had to have surgery on a fissure.
I have never had any bowel/bladder issues in my life - I know ALS/MND doesn’t normally show these kind of symptoms.
Over the course of the next 4 months the pain remained and increased and slowly the pain edged towards my right hip.
I started to experienced what I now know as fasciculations in my perineum area.
I would go for short walks 600-800 meters in which afterwards it felt as though my legs were incredibly fatigued.
I started feeling burning areas and wide spread fasciculations in my legs.
I did roughly the same amount of walking for 2 weeks and my legs just wouldn’t stop feeling extremely fatigued and painful and this kept increasing until woke one morning and my legs pretty much didn’t work.
I was admitted to hospital for the next 6 weeks and placed in the neurology ward in which time I had every test done - MRI of brain and spine / Blood tests / urine tests / Lumbar puncture / EMG / Ultrasounds etc.
I had severe hyperreflexia (mostly in my legs) to the point I had multiple neurologists help me stand and I needed support to remain still and upright, weakness where I struggled with lifting my arms, extremely dilated pupils, a skin change on my arms where it felt extremely dry, was wide awake without feeling tired for the next 3 days, no bowel movement for the next week, breathing was shallow, and as you can imagine a lot of anxiety from the situation.
Test after test, week after week and they would eliminate more sinister things which was good..
After 6 weeks I was moved to a rehabilitation center and pretty much had to learn to use my leg muscles again.
The diagnosis being made as FND.
My EMG I believe was clean
Though since I have been back at home for the last month.. I have noticed a lot of change in on-going symptoms.
-mucus always sitting in the back of my throat
-extremely emotional to the point I will find myself crying and feeling absolutely helpless many times a day
-my muscles shake and have a ripple affect when they are flexed
-fasciculations throughout my legs mostly but also all around my body which were not very present in hospital but are now almost constant while I am laying / sitting etc
-muscle loss especially in hands and arms
-skin feels incredibly loose
-heartbeat which feels like it radiates through my body much more pronounced than prior to all of this (I felt this day one when I woke up)
-dry mouth, dry eyes
-urgency to have to go to the bathroom with diarrhea very often
-pain in my right lower abdomen
-waves of feeling semi okay to incredibly unwell at the drop of a hat
-complete loss of appetite
-frozen feet which sweat, palms always sweating and swinging body temperatures
-clenching of my teeth
-I thought I had a tremor while in hospital and when I first came home but I now believe that could be muscle weakness.
My main reason for posting here is FND is a bit of a ‘we don’t overly know’ category.. and I feel my symptoms have changed slightly, increased in some areas.
With the presence of hyperreflexia being so pronounced and possibly being due to motor neuron damage, am I wrong in assuming I should be looking for another complete neurological examination along with a second EMG since my hyperreflexia has settled to the point I can slowly walk?
I hope this all lays within the rules and I appreciate the time in which anyone reading this has taken.
I’m a 38 year old caucasian male from Australia, over the last 7 months my life has been turned upside down..
it started with waking up one morning with a pain in my groin.. I couldn’t pinpoint it exactly though it was around my right testicle/spermatic cord.
After a week or so I had incredibly sharp feeling in my urethra after I urinated.. like pins stabbing though it.
I started feeling extremely fatigued, in a way I had never experienced in my life.
I had std test after std test for months.. blood tests.. everything.
I developed pain in my anus within a matter of weeks and had to have surgery on a fissure.
I have never had any bowel/bladder issues in my life - I know ALS/MND doesn’t normally show these kind of symptoms.
Over the course of the next 4 months the pain remained and increased and slowly the pain edged towards my right hip.
I started to experienced what I now know as fasciculations in my perineum area.
I would go for short walks 600-800 meters in which afterwards it felt as though my legs were incredibly fatigued.
I started feeling burning areas and wide spread fasciculations in my legs.
I did roughly the same amount of walking for 2 weeks and my legs just wouldn’t stop feeling extremely fatigued and painful and this kept increasing until woke one morning and my legs pretty much didn’t work.
I was admitted to hospital for the next 6 weeks and placed in the neurology ward in which time I had every test done - MRI of brain and spine / Blood tests / urine tests / Lumbar puncture / EMG / Ultrasounds etc.
I had severe hyperreflexia (mostly in my legs) to the point I had multiple neurologists help me stand and I needed support to remain still and upright, weakness where I struggled with lifting my arms, extremely dilated pupils, a skin change on my arms where it felt extremely dry, was wide awake without feeling tired for the next 3 days, no bowel movement for the next week, breathing was shallow, and as you can imagine a lot of anxiety from the situation.
Test after test, week after week and they would eliminate more sinister things which was good..
After 6 weeks I was moved to a rehabilitation center and pretty much had to learn to use my leg muscles again.
The diagnosis being made as FND.
My EMG I believe was clean
Though since I have been back at home for the last month.. I have noticed a lot of change in on-going symptoms.
-mucus always sitting in the back of my throat
-extremely emotional to the point I will find myself crying and feeling absolutely helpless many times a day
-my muscles shake and have a ripple affect when they are flexed
-fasciculations throughout my legs mostly but also all around my body which were not very present in hospital but are now almost constant while I am laying / sitting etc
-muscle loss especially in hands and arms
-skin feels incredibly loose
-heartbeat which feels like it radiates through my body much more pronounced than prior to all of this (I felt this day one when I woke up)
-dry mouth, dry eyes
-urgency to have to go to the bathroom with diarrhea very often
-pain in my right lower abdomen
-waves of feeling semi okay to incredibly unwell at the drop of a hat
-complete loss of appetite
-frozen feet which sweat, palms always sweating and swinging body temperatures
-clenching of my teeth
-I thought I had a tremor while in hospital and when I first came home but I now believe that could be muscle weakness.
My main reason for posting here is FND is a bit of a ‘we don’t overly know’ category.. and I feel my symptoms have changed slightly, increased in some areas.
With the presence of hyperreflexia being so pronounced and possibly being due to motor neuron damage, am I wrong in assuming I should be looking for another complete neurological examination along with a second EMG since my hyperreflexia has settled to the point I can slowly walk?
I hope this all lays within the rules and I appreciate the time in which anyone reading this has taken.
