Could not be??

[Pookie]

Hi all,
I'm currently beside myself and would like your opinion please. I have a strong family history of mnd. My father, grand father, auntie and cousin all died with 9-12wks of diagnosis. Very rapid progression....
The last 2wks I've had lots of twitching in my body and predominantly in my bicep muscle. I can barely lift a shopping bag or pick up my kids with that arm BUT I don't have any other muscle weaknesses or inability to do anything. My neck also feels heavy and different. I can still lift my arm above my head and use it. Is it just early days and it will end up in my fingers or am I jumping to conclusions? I lie awake at night with twitching all over my body and dread going to bed. I passed all the tests at the Drs with pushing, pulling etc... But not sure if it's just early days??? Can mnd start like this? I also have what sounds like popcorn popping constantly in my ear...
I'm not coping very well. I'm not seeing a neurologist until next week (hopefully)

 

[GregK]

Read the sticky titled READ BEFORE POSTING.

You won't find yourself there. Lucky you! 8^)

 

[affected]

I'm very sorry you have had so many in your family succumb to ALS or MND as we call it.
You have some of the top Australian MND specialist neurologists in Melbourne.
What gene is your family?
What kind of onset did they have, and did it take them long to get diagnosed?

You might consider getting gene tested regardless of what is currently happening now so you know where you stand (if you know your family gene).

For now, I'm curious as to how your doctor found no weakness if you can barely pick up a shopping bag.

One thing, if your FALS is that rapid progression (which is unusually rapid), you will find yourself failing rapidly, even in the next week.

Good luck at the neurologist (I presume you mean an MND specialist not a general neurologist, they are a waste of time if you suspect MND).

 

[lgelb]

Pookie,
Sympathies for your many family losses. With that history, perhaps it would be as well to know what mutation runs in your family, to be followed and to participate in research. But what you describe is not generally the onset of MND.

Best,
Laurie

 

[Pookie]

Thank you all and I did read the sticky before posting but when the top neurologist in Australia Dominique Rowe is not ruling it out then I am concerned and apparently have every right to be concerned given my history and symptoms. They said everyone is different. Why else do I not have strength at all in my bicep? If I lift something for example to put in the freezer I cannot do it. I held a baby yesterday and couldn't hold him. It's when I hold something heavy that I would fail all tests...
Is it impossible to have gradual weakness to then no mobility at all as on here I did read that it's impossible but elsewhere and speaking to specialist it seems to be possible... ???
My family has the SOD1 gene.
Thanks for your responses.

 

[affected]

Dominic Rowe is in Sydney at Macquarie University.

Did you travel to Sydney to see him?

 

[Pookie]

Over the phone as he treated my cousins and auntie...

 

[Nikki J]

Is he helping you to be seen soon? By him? Or by someone he recommends closer to you? There is a variant of sod1 that is very fast ( though not usually as fast as your family unless they were symptomatic for a while before they were properly evaluated) I am told by neuros that sod1 people seem to be an exception to the twitching rule and can twitch for years prior to anything else so hope the arm issue is something else.
You can lose one muscle in an area and still function then as you lose surrounding muscles you can't. But there should be a specific thing you can't do ( a certain motion that you may not immediately detect though the neuro should detect it)

Do you know your gene status? I am sorry about your family history.

Please let us know what the neuro says

 

[Atsugi]

Allow me to pile on, if only to be sympathetic.

I'm really sorry to hear about your family. I can't imagine that pain.

Personally, I've never heard of a progression quite THAT fast. But I don't know everything.

I must reinforce what others said: If it's ALS/MND, then we would expect at least one muscle to be supremely affected. Isolate your muscles, test them with a small weight. Is there one muscle that just isn't working anymore?

The doctor's phone call: He CANNOT rule out anything over the phone. So I wouldn't count that.
So for now, based on your three posts, I only have two things to offer:
First, you didn't describe the onset of ALS/MND. Maybe something else, compounded by fear.
Second, if in the worst case, you have ALS/MND of an extremely rapid variety, I there is nothing to do about it. Get your affairs in order. prepare for a diagnosis. Prepare to notify others and turn your affairs over to someone. Then just try to get in to see the doctor. So you can get disability benefits started.

Good luck. Stay in touch. Use this thread to post updates.

 

[affected]

OK Prof Rowe is like our version of Dr Bedlack for those not in Australia.

I'm glad he has spoken to you and will be directing you to see the right neurologist locally. It sounds like you are waiting for that office to call you with an appt time?

I do agree with Mike about getting your legals in order, but also to just be kind to yourself this week.

 

[Pookie]

Thanks again for your responses.
I'm organising a referral to get into the neurologists at Bethlehem which is who Sandra from Dominique Rowes rooms has suggested in Melbourne. Otherwise if the wait is too long I'll go to Sydney and see him.
I know my family is very fast. I watched my dad who was traveling around Europe to come home and say his thumb was weak. Every day for 12wks he lost mobility somewhere in his body until he died. Same as my cousin who was 9wks.
I hope I am wrong but I can't deny the fact I can't lift anything. I've read lots of these threads and understand your frustrations of people jumping to conclusions as maybe I'm one of them but I know my body and feel there's something wrong and having the same 'maybe it's something else' conversations my dad had....
I'll keep you all posted. I'm sorry you're all living in your own nightmare and I know what you're going through having watched it many times... X

 

[affected]

Bethlehem has the top reputation so you are going to all the right people to figure it out one way or the other.

I will say there is a difference when you have an obvious FALS history and you even know the gene. It doesn't mean you do have ALS, but it does mean your concerns are more than a little twitch or perceived weakness.

I'm glad you are working with the best because you will get the answers. Please update us once you get to see someone at Bethlehem. I hope they get you in fast as obviously you need to solve this, particularly if such rapid progression is in the history.

 

[Nikki J]

I hope they see you very quickly. I would be worried too. My family's FALS is much slower than your family's FALS but it is nightmarish nonetheless. There are of course other things that can cause inability to lift but that is muscle failure and you would be foolish not to worry given the history. You are in my prayers

 

[KimT]

I hope you get seen quickly. I'm glad to hear you're going to the best. Please keep us posted.

 

[Pookie]

Hi all,
Paul Pullman just called and I'm going to see him on Wednesday in Geelong...
Will keep you posted.