Thread: Aussie alone
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Old 08-29-2008, 06:24 PM #1 (permalink)
Suzan Williams
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Suzan Williams
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Smile Aussie alone

Hi all - I am so impressed with everyone's genuine concern and interest in all who visit this site. I have been avidly reading everyone's histories for some time now, but hiding in the background thinking about replying, then putting it off. Loved the thread about bra snapping, gave me a laugh when I needed one. There are so many of you, Lydia - you more so lately, that are going through what I am - the undiagnosed, am I loosing my mind, "I feel broken" stage.

Couldn't find my original thread introducing myself, but thought I'd write again as I am pretty much alone down here. Have talked to another GP re symptoms and he tried to get me into the only clinic in Melbourne that specialises with Motor Neurone Disorders, but you can't go there until you have a diagnosis. Yet I have to put up with Alphabet man (his name is so long you can't pronounce it) while he incompetantly goes about finding out what is wrong with me. At my first nerve conduction the sticky things kept coming off so he had to use sticky tape and his EMG only lasted about 15 minutes which he did while I was sitting up on the edge of a bed and then expects me to relax! - I think I will just have to spend more money and go to another neuro even though I am due to go back in October for another EMG, NC.

My symptoms are still advancing, ie fasics arms, legs, (now in my face/scalp/throat), muscle soreness (every few days it is a different muscle that obviously had a workout overnight), weakness (no atrophy), hyper-reactive to sound/touch, fatigue, cramps and I even had a massive cry the other day which is just not me.

I live in a smallish community, so I can't talk to anyone here as my children don't know anything yet and I don't want them to find out third hand and therefore scare them unnecessarily, but I have explained things to my hubby, yet I still don't think he understands the seriousness of what is happening to me. His words were "I hope you don't having anything like that (MND) cause that would be hell". My best friend is one of the local "broadcasters" so I can't talk to her, yet I think she suspects something.

Its just nice to know that there are people out there like me, even though I can't speak to you face-to-face, but you are all in my thoughts.