my first neurology consulatation

[Danmorgan29]

Hi all,
I'm 49 old male in the UK. My journey so far: Tomorrow, 1st April, I have my first appointment with the neurologist via telephone (been on the waiting list since November). I had a NCS conducted on 19th March, and the consultant didn't give me too much information other than that he mentioned i have carpal tunnel and I do show signs of ALS but also some others that are not associated with it and will send a report to my GP, He also witnessed all my fasciculations, which was great because at this point it felt like I was being ignored by my GP who would only go and see them about one condition at a time which is a problem when you have a list as long as the River Thames!
July 2024, I could not control my left leg; it felt like my brain wasn't connected to my leg (lasted around 15-20 minutes). The hospital initially said I had a TIA. The MRI on my head showed no stroke damage or lesions.
July 2024 persistent foot pain when waking up and difficulty walking, which lasts a couple of hours
July 2024, started with difficulty finding words.
July, Balance issues started occurring daily.
August 2024, Left leg seized up, extremely painful, which lasted a week; could not bend or put weight on it.
August 2024, itching in the calves began and hasn't stopped.
September 2024, Speech started to slur and a slight droop in the right side of my mouth and drooling
November 2024, Hand tremors began and difficulty with things such as hanging oven glove on hook (couldn't get it on the hook)
November 2024, first tripping episode, stroke unit transferred me to Neurology, stating symptoms were progressive
December 2024, Right eyelid started drooping slightly and pupils different sizes.
December 2024, noticeably clumsy and dropping things or not quite grabbing things correctly
January 2025, Balance issues progressed and I almost fell through a glass door.
January 2025, I experienced a numbness in my left thigh, which lasted around 4 hours
January 2025, Emotionally unstable, crying, and my wife states I have become nicer
January 2025, Right leg forgets to follow through when walking, and knee gives way
February 2025:-
Daily cramps in calves and hands
Speech problems (difficulty getting words out of my mouth)
Choking on liquids
Fasciculations started in my thighs and progressed to my entire body, also feeling only what I can describe as micro fasciculations in the top of my head, back of my head, around my chin and my neck. The fasciculations are also prominent in my upper arms, quads and buttocks, plus micro fasciculations in the top and sole of my feet.
I experienced what I can only describe as an electrical buzzing in my chest cavity one morning.
March to present: I was trying to stir food in a bowl, and my hand wouldn't move, which was a similar experience I felt with my leg
daily hiccup and burping constantly
Speech is difficult to get words out
Noticeable muscle atrophy in left thigh and left calf
tripped over my left foot as my toes didn't leave the ground
Today i had difficulty with writing, which became messy and some difficulty in spelling.
That's about it for now, I am sure I have missed something, and I'm sure some of this is not relevant, but I wanted to keep a log of anything different that has happened to me to assist with the specialists.
Maybe someone here has had a similar experience.
Thanks all
Dan

 

[lgelb]

Hi, Dan, some of what you report leads me to think of neuromuscular conditions that are "better" to have than ALS. Did the neurologist look at your eyes specifically?

Did you have both an NCS (shocks) and EMG (needles)? I would certainly try to get the full test reports. Feel free to post them here with your details concealed.

 

[Nikki J]

You had an ncs( shocks) but not an emg( needles)? Was the comment about some signs related to whatever test you had or to your reported symptoms? Agree the eye symptom struck me as leading elsewhere

 

[Danmorgan29]

Hi, he wasn't worried about my eyes as that wasn't present at the time, I only had the NCS conducted, he said that if the neurologist requests an EMG they can see me quickly, the neuropysiologist did the planter test (big toe raised only) he also checked my reflexes and the finger to nose test which i was not successful in achieving, he also tested my strength in limbs and neck which was weak in all areas. Other than that, he didn't say much and it felt like he didn't want to give me too much information and wanted to wait for the neurologist. Although frustrating, i get that. Also to note, I did break vertebras L4 and L5 30 years ago the was main body and discs which was pinned (metal work was removed after 6 months), and there was no spinal cord damage, and to be fair whenever I mention this to anyone (GP's) they ignore it.