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sleepy

Distinguished member
Joined
Dec 4, 2015
Messages
119
Reason
PALS
Diagnosis
01/2016
Country
AUS
State
NSW
City
Armidale
I have read the stickys.. I have read a lot of threads. It's wonderful that you support each other and answer new people's questions. I hope you do not feel I am wasting your time.

I am female, 39 next month. I started slurring my speech 3 months ago. It does vary through the day, and is worse when I am tired. Which is all the time.

I had some time off work for surgery on my left wrist, and when I came back I noticed weakness in my right hand. Handwriting significantly changed. It felt weird. Can't open bottles and jars. Can't clip my kids fingernails. Buttons, zips, bra clasp. I drop things.

I raised it with my gp and she said she had noticed my speech too. I have seen a neuro. I don't have an answer yet. It doesn't present as 'classic' anything.

Over the last month I have noticed both weaknesses becoming more pronounced. Slurring is more frequent, but still not all the time, but I do speak with a slower and more deliberate pace - the neuro described it as like someone who had been deaf. I have difficulty manipulating cutlery. My hands type at different speeds and I do a lot of backspacing. I attended physio for post surgery on my left hand... they measured grip strength to assess recovery. My right hand had dropped from 20 in July to a strength of 4 in November.

I have also had significant increase in fatigue. I could never sleep during the day, and now I will sleep 4-5hrs at least one day on the weekend. Very unusual for me.

I am not in pain or numb or tingling. Just frustration from not being able to do things. At first I tried to keep it all private, but it is now so obvious at work that I have told people I am having tests. My boss and colleagues (and others) have said that while they don't think I am drunk, that I sound drunk.

I get results from first blood test for MG next Friday. MRI showed a few spots but not enough to indicate MS. EEG fine. I am worried. Please, tell me I'm in the wrong place.
 
Sleepy, you're really at the beginning of the diagnostic process. I personally don't see any reason to jump to ALS.

The hallmark of ALS is a muscle that won't go. At all. Ever. And there's no feeling of weakness or fatigue associated with that failure to contract.

Your description sounds like something rather serious, so you definitely should continue following your doctor's lead into your health investigation. But it's much too early to go from "slurring, weakness, and fatigue" to ALS. There are many other more common conditions that need to be ruled out first.
 
Great. Thank you.
 
MG is much more likely. Silent periop stroke another possibility, other dz. I think you are in the wrong place. I hope you find an answer soon, which is likely to be treatable at least in part.

Best,
Laurie
 
I hope so too. Thank you for your time and reassurance.
 
Mg not indicated on first blood test. EMG, another MRI and lumbar puncture, and more bloods next week. Neuro has progressed it urgently. I guess that's good, and not good.
 
There is a challenge test for MG. The blood test is positive in 90% of generalized cases; obviously, that leaves 1 of 10 needing diagnostic confirmation another way.

Hope you have answers soon.
 
Not a diagnosis but my Neuro said today that based on results, in particular emg, it is most likely mnd. I am being referred for second opinion to 'the guy' in Sydney who specialises. Here's hoping he can find a way to rule it out. Do I still belong in this forum until definite diagnosis? Mind blank and racing. Emotions are stormy waves. I don't know what to say or ask...
 
I am very sorry things are trending this way. Probably yes hang out here for a bit until you get a more definitive answer. There is a statistic quoted by the US ALS association that 10 percent of initial ALS diagnoses are incorrect. We see it sometimes here mostly when the diagnosis was made by a neurologist that was not a neuromuscular specialist.
But please do ask questions as they occur. The shock of having someone say MND when they are talking about you is terrible even if you strongly suspected it. Were you offered riluzole ?
 
sleepy we have some of the worlds top MND neurologists so you will be checked by experts.

Write down a history of your symptoms. You can take your time to get it right.
Do you have an appointment date? Do you know who you will see?

I know it's hard as you may have to wait especially with xmas hitting now, but you need to try and lift your head and look at life. What will happen will, but each day you have now can't be recalled once it has passed.

Look up the MND NSW website and the resources they have too.

You can keep talking in this thread as you follow through the diagnostic process.
 
Thank you Tillie. I am seeing a Professor at Macquarie - I think Prof Rowe? - on Jan 14. I have always taken the view that what is, already is, and the variable is just whether I have knowledge about it. Not knowing doesn't change what it is.

I will check MND NSW, thank you.

Merry Christmas to all. Enjoy every day.
 
And a Merry Christmas to you, Sleepy!

"Enjoy every day"... so profound and so correct. Regardless of what is or is not... you have the attitude that will help you squeeze the best from every day. And that really is one of the greatest lessons to be learned. Some grasp it naturally and others come by it with difficulty. Some require crisis for awareness to be granted and some just "know".

I hope, in the new year, you find good reason to bid us your goodbye. But stay or go, if you've learned to "Enjoy Every Day", life will continue to reveal those treasures you have yet to find.

My best to you...

Jim
 
You won't get better than Prof Rowe so that's great news.

I hope they find something else, but it is good that you are being sent to the best place to get to the bottom of it all.


Tillie
 
I am failing at 'enjoy every day' :(
 
Sorry sleepy. The waiting for the specialist when someone has mentioned MND is excruciating. You know worry does not help but it is hard not to worry. Keep trying and keep busy!

Wishing you the best
 
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