Recent content by Flashster

Hi here4her, It was every kind of you to comment on my thread. I am not convinced its bulbar ALS I guess folks here have been through many of the investigation I have had and I thought perhaps someone might say that they have a clue what I should do. Elher Danlos is new to me, and I am told they...

Thank you. I have been trying to make a noise but I've not the energy any more. Kiara - I'm sorry I've only just read your post. I have it from a Elher Danlos professor that my pharyngeal issues (at least at my severity) are very unusual for that condition. It usually affects the oesophagus and...

I had it done way back (20 months ago or more) when things started and they saw nothing (it was done with liquids only as that's all I could swallow). That's when some doubt about my being genuine came in I think. Some months later a separate hospital did an oesophageal manometry test and found...

Unfortunately I am a skinny guy anyway, but yes I am quite underweight. The past year I added a load of olive oil to anything I managed to swallow to keep my weight up. The weight will drop off now, if I manage to keep myself hydrated. I really get the impression that they don't realise how...

Re: Back for the third time with virtually no swallowing I hope the doctors are. No one seems to have explained why I cannot swallow. I asked my family doctor about a tube yesterday but, despite me sitting there spitting into a bottle, he said "that would be a last resort". I've not said it...

HI Elaine, Its not psychological. I'm not trying to convince myself I have ALS. The neuro actually told me that 99.99% of people with my symptoms do actually have ALS, but, presumably because my nerves haven't shown up as abnormal in the EMG's he said he believes I have two conditions. The...

Thanks. I have fasiculations and cramps also (everywhere including the tongue), but they've put this down to benign cramp fasciculation syndrome. I feel some weakness in my hands and right leg, but this was not significant during any examination. I feel tight/loose (sorry hard to describe)...

Hi All, I posted some time ago about my swallowing issues. I have been liquids for 2 years. Recently I had to go to thin liquids, and the past few days I am aspirating. I've had 5 EMG's & NCS's, CT scan of head, oesophageal manometry, Nerve hyperexcitability test. The diagnosis has so far...

Neurologist said that he detected no weakness or coordination issues, but ordered another EMG. He seemed to hint that there's a possibility that its a motor neurone disease, but he at this stage doesn't think it is.

Thanks Toto for ataking the time to reply. I have no death wish. I want to live now more than ever. I 'm going through a little hell here. The progression has been from swallowing to fasiculations/cramps to weakness over a period of a year and a half. I'll try to get a grip. I'm hoping the...

Having woken up with even floppier arms (and legs) I logged in hoping to see a "get a grip" message from trfogey. Just realised why he's been so quiet. So sorry. Very sad.

Just as an update: The fasiculations have now spread to my shoulders (particularly right). After I've had fasiculations in the area the area feels weaker and somehow looser(?) The fine control of my hands (e.g. moving my mouse to check a checkbox) is tricky. I get my parnter to check for...

I guess I was hoping for a "you don't have it, go away", not a diagnosis. I am dreading the appointment this week with my neuro. People have continually told me for the last year I don't have it, but now it seems to me hard to ignore the obvious signs. From the knees downwards I have continual...

Danijela - "they" meaning my neurologist. He said he'd use it as a baseline to analyse if there is any atrophy at my next appointment.

jamiem - are you saying this sounds as though it could be als?