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aus27

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4
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PALS
Country
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Victoria
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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.
 

joelc

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Joined
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CA
State
BC
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Abbotsford
I am so sorry you are going through this! Do you have an ALS (MND) centre in your area?
If so, go to them and get some advice, support and get tested by them! You have been living with this for a long time! My heart goes out to you and your loved ones!
Get agressive and demand some tests to determine what is wrong.
Try to control your worrying, I know it is hard, but it does not help solve anything! Try to relax and focus your energy on finding a doctor that will help you get a diagnosis!
My prayers are with you! There are a lot of people here who can relate to your frustration!

God Bless, Joel
 

Al

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Joined
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Messages
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Reason
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Diagnosis
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Country
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State
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Hi Chris. It certainly seems from the symptoms you describe that the docs should be taking you more seriously. I did find myself that when I started to get short of breath it helped to sleep only on my side. You could try that and it may help. Propping a pillow behind you can help to keep you on your side. I'm not sure how the Aussie system works so can't offer advice on that but it sounds like you need a Respirologist and a Neurologist. Hope you can arrange it. AL.
 

aus27

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Joined
Mar 15, 2007
Messages
4
Reason
PALS
Country
AU
State
Victoria
City
Melbourne
thanks for the replies people.. and yes i don't know why the doctors are being lax about this...

Al, do you find yourself short of breath, or at least find it an 'effort' to breathe, during the day as well as night ? i read somewhere else you just use your bipap at night ? i am breathless day and night..
 

Al

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Country
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State
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NW of Toronto
I can get short of breath walking from room to room but don't get that way just sitting around. I do just need the Bipap at night so far.
AL.
 

aus27

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Joined
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Messages
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Reason
PALS
Country
AU
State
Victoria
City
Melbourne
i see - how are you with talking ? i can talk but i run out of puff quickly and need to pause for a while .. i'm not sure if this is lack of breath of weakness around the throat..

sorry for asking all these questions, i'm just trying to get help from people who know what they're talking about while i'm 'waiting' for assistance here...
 

Al

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Joined
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I am fine with talking but if I get on a rant I can run out of breath quickly. Normal talking is OK. In my case it is the lungs rather than throat as far as I know.
AL.
 

emjoi

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Messages
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Lost a loved one
Country
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Melbourne
( I know I said i was walking away from the forum, but I've stopped for a peek... Hi, one and all. Hope things going well for you).

In Melbourne:
The Austin Hospital in Heidelburg aparently is a knowledgeable in MND/ALS.

The Bethlehem Hospital in Caufield is even better... it specialises in Neuro diseases.
http://www.bethlehem.org.au/

Then there is the MND Society of Victoria.
http://www.mnd.asn.au/
Volunteers and very very helpful.

You obviously have something ailing you. But it's probably not MND. The fact that you've had visible symptoms for so long sort of hints to me that it's something else. It should have progressed a good deal further by now.

If you don't like the responses you are getting from your current doc, well, go to another.

MND not only affects people physically, but perfectly healthy people can get "infected" with it. The initial symptoms are so simple and innocent, and common, that if you have been in contact with the disease then it's easy to fall victim to a bit of paranoia.... which I did for a while there.
 

CindyM

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Learn about ALS
Country
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New England
City
Anytown
Welcome back Emjoi! Looks like you decided to visit at jsut the right time! One of the things I like best about this foum is that peoople all over the world are able to help each other. Cindy
 

aus27

New member
Joined
Mar 15, 2007
Messages
4
Reason
PALS
Country
AU
State
Victoria
City
Melbourne
thanks emjoi, nice to see a fellow melbournian!

thankyou for the links.. and well, i hope it isn't MND, but it is progressing, and resembling it in many many ways.. from my research i couldn't find anything else, but i hope you're right.

emjoi said:
( I know I said i was walking away from the forum, but I've stopped for a peek... Hi, one and all. Hope things going well for you).

In Melbourne:
The Austin Hospital in Heidelburg aparently is a knowledgeable in MND/ALS.

The Bethlehem Hospital in Caufield is even better... it specialises in Neuro diseases.
http://www.bethlehem.org.au/

Then there is the MND Society of Victoria.
http://www.mnd.asn.au/
Volunteers and very very helpful.

You obviously have something ailing you. But it's probably not MND. The fact that you've had visible symptoms for so long sort of hints to me that it's something else. It should have progressed a good deal further by now.

If you don't like the responses you are getting from your current doc, well, go to another.

MND not only affects people physically, but perfectly healthy people can get "infected" with it. The initial symptoms are so simple and innocent, and common, that if you have been in contact with the disease then it's easy to fall victim to a bit of paranoia.... which I did for a while there.
 
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