ALS? Pretty worried

Brookah

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Hi all,
Thanks for reviewing.
Im a 43 yr old mother who has had left arm weakness for about 9 months now. Dexterity in my hand is fine just generally weakness when trying to lift it move things. Weakness noticeably on examination by doctors. I also have nerve fluttering in different parts of my body eg legs and arms. Have had MRIs to rule out MS and any other musculoskeletal issues. Was sent for a nerve conduction study which was all clear.
Have now been referred to a neurologist and waiting on an EMG appt.
My doctors thought the nerve conduction study coming back all clear was a good sign but I now see EMG not nerve conduction studies are the best test to rule out or confirm ALS.
Any thoughts from any if this is sounding like ALS? Do you also get nerve fluttering in different parts of the body or just in affected area in the early stages?
Thanks
 

affected

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Sorry you are going through this Brook - are you saying that doctors have stated they have found clinical weakness?
Really, at this point, get the EMG and we can talk from something objective.
May I ask where the neurologist is as I'm an aussie.
 

Brookah

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Thank you and thank you so much for responding.
Im not completely sure what language has been used about weakness. All I know is on physical exam at the GP and Neuro they both when conducting physical exam (you know the push me away, pull etc etc) noticed the left arm weakness. Will make sure I ask when see doctor next.
I’m in Brisbane 😊
 

affected

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great, have you been referred to the MND clinic at the Royal by any chance?
That sounds like clinical weakness, but let me assure you that there are hundreds of potential reasons for clinical weakness that are loads more common than ALS is, so just don't jump to conclusions too soon.
 

Brookah

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So sorry for the delayed response, life kind of got in the way and I’m just in limbo waiting for my referral to the Neurologist who works both privately and publicly at RBWH. He specialises in MND but obviously also other neuromuscular disorders.
Given the neurologist I saw referred me to him and I’ve had a bad day at the gym where my left arm just didn’t work properly, I’m back to freaking out again.
Will definitely reach out once I get my EMG results and pick your brains for good Australian supports should there be a need.
 

Brookah

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Hoping someone out there can answer a couple of questions. Still waiting on my 2nd neuro consult and EMG. The longer I wait the more my anxiety increases. I’ve been referred to a neuro who specialise in MND and neuromuscular disorders so that makes me even more nervous.

I have left arm weakness (clear MRI & nerve conduction). Only noticeable when I go to lift something with some weight eg pot of water in the kitchen. Is that consistent with early stages or is there usually weakness at rest and doing everyday tasks eg picking up light objects, eg a pen

In early stages do twitches occur all over body or just around the areas affected?

I’m 42 with a toddler and while I know MND can affect any age. I desperately hope
my age and gender give me some better odds of this not being likely (I know thats silly).

My best wishes to you all and thanks for any responses.
 

Nikki J

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You are right that ALS risk increases with age and in non genetic ALS is more likely in males especially premenopause.

you can’t tell anything by twitching patterns really

weakness is a complicated issue. you did say the doctors found clinical weakness on your exam As ALS initially affects one muscle and then spreads there is usually something you can’t do but everything else is ok then as things spread more things become impossible but also movements that use multiple muscles may be possible but more difficult if one or more of the muscles involved are affected
 

Brookah

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Thanks Nikki, much appreciated.
 

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Where have you been referred to Brookah?
The good news is that the twitches really mean nothing on their own, so don't focus on them.
I know it is hard to wait, but honestly the more you can do to look after yourself and your toddler, physically and mentally the better. Remember you will never get these weeks back, every moment of raising a child is precious so make the most of them as regardless of the diagnosis you do or do not get.
 

Brookah

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Lovely advicethanks.
Dr Robert Henderson although I just got advised today that my appointment isn’t until the end of December. It will be a long wait 😬.
Got my blood results back & all normal eg CK, thyroid and all the rest. I find it so ironic that with every test eg MRI, NCS, bloods that get done I’m hoping they find something when normally it’s so the other way around. They have added brisk reflexes to my referral alongside the clinical weakness though.
 

Nikki J

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Sorry you have to wait so long. As you noted Tillie’s advice is golden.

I totally understand wanting a nice easily fixable answer from the tests. Hoping when you get to Dr Henderson that will be another negative answer
 

affected

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Sorry you have that long a wait. We were fast tracked to see Dr Robert Henderson when we got diagnosed as his symptoms were so obvious, so we only had to wait about 5 weeks. This was 7 years ago and we were told then that it was normally 2 - 3 months to get the first appointment. We had been through months of appointments with other specialties, not suspecting bulbar ALS in those early months.
My husband had already sold his business and was unable to work and was rapid progression, so fast tracking was applicable.

Please do all you can for your general health in the meantime and make the most of this time still. Let us know once you get to see Hendo, you are in good hands. (You can ring the clinic and ask to go on a cancellation list too)
 

Brookah

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Thanks affected. Sorry to hear about your husband.
I know I’ll be in good hands with “Hendo” 😉. Great idea with the cancellation list.
I’ve also got an appointment with the neurologist who referred me to him this week just to ask a few questions about his thoughts and reason for referral in light of the 4 month wait.
Have a great GP who will help out with some
anti-anxiety meds and I’ll most definitely be prioritising my son more than work (I work crazy stressful hours) just in case.
Can’t thank you and Nikki enough for the communication and support. Your hearts must be so big.
 

Brookah

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Apologies for posting again. I’d be going pretty well while still waiting for my EMG but I have had some new symptoms which has really set me back mentally. Started to experience shoulder pain in my weak arm, I attempt to lift my toddler up in the air but I just couldn’t do it. Have had to go to physio for my shoulder and back. Am aware MND is generally not painful but just wonder if muscle strain/pain from overcompensating muscles is common. Also went to the gym and for the first time had a symptom (tremor) in my right hand after I took it to fatigue.
Not sure if either of these are MND like but it’s taking me back to being convinced I have MND and in a bad anxious state.
 

affected

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Please return to your GP with your concerns.
We don't treat MND with physio, so work as directed by your GP and physio.
Pain and tremors are not MND, so as for help with the anxiety while you get all this sorted.
 
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