[Josh_DownUnder]

Hi,

My names Josh, I'm 30 and live in Australia. I have a very complex syrinx from my T2-C1 level which I have had since birth but only started developing neurological complications around the age of 16. It started on my left side with foot drop, and over the course of the next 14 years my left leg gradually got heavier, I began to trip a lot, so I started using a walking stick, my right leg then became heavier I then progressed to a frame and have been in a wheelchair fulltime for approx 4 years now. I cannot feel hot/cold apart from the top of my head and on my right hand. During the last 18 months I feel like my symptoms have excelerated and I have become increasingly paranoid that there may be some underlying motor neuron condition that has also come into play in the last few years. I experience body wide muscle twitches and spasms. My Syringomyelia can explain all this yet I also get them all over my face, and have developed atrophy on both sides of my face, have a numb sensation on my forehead and twitching of the tongue. When the symptoms started on the left side of my face it felt like a bee had stung me in the centre of my cheek. it was not long after that I began to notice the atrophy and feel more and more of the spasm's/twitching all over my face. I've read that numbness and pain are not symptoms of ALS, so I am hoping that's not the case. I can move my tongue side to side pretty fast, and this may sound weird but being in a chair I have to do this a bit, I can carry a large bottle of water in my mouth for a fair distance by grasping it with my teeth. So my jaw is still fairly strong. However the muscles in my face are wasting and getting weaker and look thin and tongue twitches . Sorry for the long rambling post, I'm a young guy whose been going through this crap for a long time. I'm just over it, and the Drs not knowing, so it would be great to get some answers. Thanks.

[MuonOne]

Have you sought an updated opinion from neuros? ALS can strike very young people:

Use search term to find New Jersey J article with title:
‘A do-it-yourself disease’

(site will not allow me to post URL before a few more posts are made)

Were fMRI exams conducted over the years . . . if so, do they differ?

[Thelma]

Well long time no hear from. Glad to seelyou posting now only if we can get others back. i am going through a scare now for me again. this time hands are involved and that has not happened before. Take care and welcome back.

[Josh_DownUnder]

Originally Posted by MuonOne

Have you sought an updated opinion from neuros? ALS can strike very young people:

Use search term to find New Jersey J article with title:
‘A do-it-yourself disease’

(site will not allow me to post URL before a few more posts are made)

Were fMRI exams conducted over the years . . . if so, do they differ?

Yes, I've been tested by several neuros and none of them seem to thinks I have ALS. They seem to think all my problems are coming from my meningocele and syrinx. They are stumped as to why my face is involved however.

[MuonOne]

Greetings, Thelma, I noticed you continue to be active. Sorry to hear of your possible neurological regression. Hopefully it is a temporary matter and will resolve soon. Summer is here. Re: ALS, several forums have almost no activity on ALS. ALS.net is quite active, so is the canadian site alsforums.com but nevertheless the amount of activity at all ALS sites seems off at least eighty percent. No real bump for them from the ice bucket challenge. I have noticed the members are frequently initiating their own web pages or more extensively using facebook or simply have a news story in the press. PLM also seems to have less activity in its ALS section.

The pacer continues to be moving turtlishly toward success.

We've lost so many people since we last 'talked.'

Josh_DownUnder, It might be worth it to find a very good chiropractor . . . the web isn't such a good place to get real answers. Except, MAYBE for ALS, I don't know how useful I am . . . I don't want to push you over the edge but one of 'my' patients had a 'diagnosis' for ALS before they discovered a need to visit an oncologist. They seem to be better now.

[MuonOne]

Thelma, you still 'post and run?'

[Thelma]

Having been around since, you know I can't remember exactly but this cenury anyway lol

All the people that I know and hear from every day of my life so far have no where to go because of the ********* Als which limits them in their communications skills and no one seems to understand enough to allow them what they need the most.............time

Time to formulate a posting and time to respond without their words being challenged or eliminated.

It is sad but nothing I can do except listen to their complaints and try to pass them on to someone who could help them.

Someone to CARE

So post me