Sidney
Active member
- Joined
- Jan 9, 2016
- Messages
- 98
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
- State
- LO
- City
- London
Hi and thank you for this forum.
In my sheer panic days I was a regular poster ands always treated courteously and kindly -even the tough love I was given was correct and well intentioned..
I am still in limbo land. Diagnosed as we stand by an excellent UK mnd/als centre with bfs and polyneuropathy plus sleep apnoea and pes cavus!
None of which I had 18 months ago.
I had fibs and sharp waves in my legs on Emg and they heard the 'denervation sound'.
Since then the fasics have gone crazy and my breathing at sleep is awful.
I go back in August to the respiratory specialist and have another Emg in September.
It is true to say that as of now after 18 months of symptoms I have no clinical weakness.
Fasics were my first symptom and I had sensory action potentials on Emg indicating sensory involvement. This led the neuro away from Mnd/als.
However he then told me of a patient like me who he had been seeing for 6 years who had a great deal of denervation but only slight foot drop .He had 'a motor neurone disease but not THE motor neurone disease.
He also told me of a patient diagnosed in December who was now quadriplegic.
So I undrstand how variable it can be.
I suppose the question to you and I appreciate how tiresome it may be is 'does any of this sound like als?'
My neuro is giving me the impression the jury is out as is the respiratory specialist.
Of course I listen to them but you all have vast and impossibly sad experience of this disease so i hope you won't mind if I ask you?
Thanks in anticipation and sorry for the long winded post.
And Mike et al thank you for the replies in the past.
Cheers
Sid.
In my sheer panic days I was a regular poster ands always treated courteously and kindly -even the tough love I was given was correct and well intentioned..
I am still in limbo land. Diagnosed as we stand by an excellent UK mnd/als centre with bfs and polyneuropathy plus sleep apnoea and pes cavus!
None of which I had 18 months ago.
I had fibs and sharp waves in my legs on Emg and they heard the 'denervation sound'.
Since then the fasics have gone crazy and my breathing at sleep is awful.
I go back in August to the respiratory specialist and have another Emg in September.
It is true to say that as of now after 18 months of symptoms I have no clinical weakness.
Fasics were my first symptom and I had sensory action potentials on Emg indicating sensory involvement. This led the neuro away from Mnd/als.
However he then told me of a patient like me who he had been seeing for 6 years who had a great deal of denervation but only slight foot drop .He had 'a motor neurone disease but not THE motor neurone disease.
He also told me of a patient diagnosed in December who was now quadriplegic.
So I undrstand how variable it can be.
I suppose the question to you and I appreciate how tiresome it may be is 'does any of this sound like als?'
My neuro is giving me the impression the jury is out as is the respiratory specialist.
Of course I listen to them but you all have vast and impossibly sad experience of this disease so i hope you won't mind if I ask you?
Thanks in anticipation and sorry for the long winded post.
And Mike et al thank you for the replies in the past.
Cheers
Sid.