47F looking for advice

[cazzahi]

I've been having CNS problem since 2021, which been classed as Parkinson early 2022, but my symptom don't fit completely, so neurologist has done so many genetic tests.

I have been getting weaker over the years even though i got a personal trainer for the 1st few years, now i don't as i can't even walk properly.
in Feb this year i got Flu and was taken into hospital with suspected meningitis, i spent 2 week in hospital till i discharge myself, i left not being able to walk, before this i was starting to have problem with slurring, horse voice and swallowing problems. i saw the neurologist in April when she was shocked by my change , weakness , speaking , 40lb weight loss. she spent time with me and said wanted me to see a different neurologist in a different hospital,

so June i went to see this doctor, he asked all symptoms and when each one happened over last few years, at the end he asked do you know why you are here, i said no, he said to assess me for MND/ALS, so i said so i haven't got it then, he said we can't say, i got a letter from him and wanted me to stay registered with him, as well as with my main neurologist.

i have had EMG done before and i get pins and needle in my hands and feet , weakness, and mainly hand and arms have gone very skinny, enough that people mention it, my EMG have always come back normal, in July i went to National Hospital for Neurology and Neurosurgery in London for another EMG and MEPs, the was reduced output in my legs, but normal as far as i could gather from them, sending info to my main neurologist.

i get fasciculations, which i have video it as never get them whilst at appointment , i get a lot of dystonia, weakness fatigue, breathlessness, hyperreflexia, positive Babinski , had falls, bladder and bowel problems, at the mo my neck weak as well, shoulder ache.

i see my main neurologist next week

would like to hear people thoughts ?? Thank you

 

[ShiftKicker]

Hello and so sorry you're finding yourself here looking for answers.

If you have the reports, it can sometimes be helpful to post- just make sure you obscure any identifying info. With the bladder and bowel problems and the sensory issues, it's not as likely to be ALS. Has anyone mentioned HSP?

Re: earlier Parkinson's diagnosis. Were you given a trial of L-Dopa to see how you responded?

~F

 

[cazzahi]

i don't have any reports in the UK, my dad has Vasculitis, HSP never been mentioned,
i'm not sure i would question things if it wasn't due to muscle loss and MND/ALS specialist not ruling it out. After all these years i would have thought it had been diagnosed by now if it was? Thank you for reply

 

[Nikki J]

How was the PD diagnosis made? And as Fiona asked did you have a med trial?

It seems like the extreme acceleration of your symptoms started after the illness mostly? It is true that illness will make sny neurological illness worse but I wonder if it is more related than that?

I do recall someone here who was diagnosed after a bad illness and had weakness and atrophy. However ultimately they did not have ALS In fact they had vasculitis. Not to say you do of course though genetic predisposition can happen ( it isn’t considered hereditary though)

A normal emg in the face of significant atrophy and weakness argues against ALS.

I do hope you get some answers soon