aus27
New member
- Joined
- Mar 15, 2007
- Messages
- 4
- Reason
- PALS
- Country
- AU
- State
- Victoria
- City
- Melbourne
My name is Chris and i've recently turned 27, live in melbourne, australia. Ever since i was 13 years old, i've suffered from a hand tremor. This tremor was diagnosed at the time as familial, benign tremor. Over the years and as i turned into my late teens, the tremor got worse, and i would suffer a fair amount of tiredness, and stiffness in my limbs. Further tests with specialists were had, and i was told there was no need for an MRI, and because i still had a fair amount of strength, i was told there is no way it could be a MND. Since then over the years my strength has got worse, i can't walk more than a short distance without being exhausted. I am still able to walk, eat, do everything, but i have a lot of atrophy, and i have a lot of difficulty with everything as i have so much weakness. I went back to the doctors in Feb this year as i now have difficulty breathing. This is scaring the hell out of me. My breathing is slow and very shallow as i try and rest, and i tend to be out of breath whether i'm doing nothing or walking around. Lying on my back, my stomach doesn't raise that much any more, but i can make it do it if i try hard. I can take deep breaths, but they are strained and a real effort. I find talking more than a word or two difficult, both due to stiffness in my neck and lack of breath. I find it too much effort to even talk on the phone any more.
I've suffered from muscle twitching since i was 13, and i still get it today. I've had intense pain in my legs over the years, after exersion, and had weird sensations in my body from time to time as well. My swallowing is still ok, but a little laboured. My eyesight is ok, but if i follow something moving quickly, like a car flying past, it seems to jolt ... I've stopped driving as i have very little strength in my arms any more.. which hurts me because i'm a real car enthusiast.
There is so much more i can't think of right now as i'm going out of my mind, as is my fiance. I'm only 27, but this is something that i've obviously had for ages. I'm trying to push the issue with my doctor but they don't seem to care that much. Next appointment is Monday. I'm sick of people telling me 'oh you're young, it can't be MND'... i know it's rare, but it does happen. The breathing part is scaring me the most. If i can still take deep breaths (for a few seconds), does that give me any indication of my lung capacity ? I'm scared senseless of dying in my sleep before anything gets diagnosed... I can sleep for a few hours, then i tend to be very restless and laboured. I'm yet to have CT scans and MRI's, no one seems to think it's urgent
It seems any over-doing it seems to make me weaker, so i'm scared to do a lot of things now. My tremor is so exaggerated by my arm weakness that i tend to drop things and throw my food everywhere now. I've lost a lot of weight, but have recently put some back on, after eating a lot more.. all i seem to want to do now is eat, as it takes my mind off my breathlessness. I'm 5ft10 and only 63kg (not sure what that is in lb) If i lay on my side, my gut seems to fall in a pile rather than stay rigid. I have a lot of wasting around my weist area, i look female! Please help, any input apreciated.. i hate our health system.
Scared,
Chris.
I've suffered from muscle twitching since i was 13, and i still get it today. I've had intense pain in my legs over the years, after exersion, and had weird sensations in my body from time to time as well. My swallowing is still ok, but a little laboured. My eyesight is ok, but if i follow something moving quickly, like a car flying past, it seems to jolt ... I've stopped driving as i have very little strength in my arms any more.. which hurts me because i'm a real car enthusiast.
There is so much more i can't think of right now as i'm going out of my mind, as is my fiance. I'm only 27, but this is something that i've obviously had for ages. I'm trying to push the issue with my doctor but they don't seem to care that much. Next appointment is Monday. I'm sick of people telling me 'oh you're young, it can't be MND'... i know it's rare, but it does happen. The breathing part is scaring me the most. If i can still take deep breaths (for a few seconds), does that give me any indication of my lung capacity ? I'm scared senseless of dying in my sleep before anything gets diagnosed... I can sleep for a few hours, then i tend to be very restless and laboured. I'm yet to have CT scans and MRI's, no one seems to think it's urgent
It seems any over-doing it seems to make me weaker, so i'm scared to do a lot of things now. My tremor is so exaggerated by my arm weakness that i tend to drop things and throw my food everywhere now. I've lost a lot of weight, but have recently put some back on, after eating a lot more.. all i seem to want to do now is eat, as it takes my mind off my breathlessness. I'm 5ft10 and only 63kg (not sure what that is in lb) If i lay on my side, my gut seems to fall in a pile rather than stay rigid. I have a lot of wasting around my weist area, i look female! Please help, any input apreciated.. i hate our health system.
Scared,
Chris.