Some advice please - symptoms of ALS?

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Pumpkin

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Good morning,
Firstly thank you in advance for taking the time to read this post.
My other half (43) has been suffering with symptoms that I am worried are indicative of ALS, I have read the pinned posts but have some specific symptoms if anyone can help please?
It started with a weakness in his right ankle which has progressed and he now has issues with balance (has fallen a few times) and is struggling to drive. He says it is like it just doesn’t work the same anymore, he struggles to lift the foot correctly and so ‘trips’ easily. Then he started getting fasciculations in the same leg (only noticed them in summer, couldn’t feel them) particularly thigh, this has now progressed to both legs, back, and arms. Then he started getting slurred speech and occasional issues swallowing.
Weight loss and muscle wasting in right thigh. He has no pain with any of this.
He has been fast tracked for tests and has had an EMG and full spinal MRI which we are waiting results for.
His initial clinical exam from the neurologist showed normal cranial nerves and eye test. Muscle wasting in right thigh. Tone normal throughout. Pyramidal weakness of right leg with grade 4/5 weakness of hip flexion, knee flexion and Dorsiflexion. Non sustained clonus at ankles. Generally brisk reflexes with spread in legs and a flexor right plantar. Positive finger reflex in left finger and some loss of sensation at C5.
Am I right to be concerned by these symptoms? My dads cousin had MND when I was younger and I remember some of the symptoms being similar although I was young at the time.
I know we have to wait for the results, but this has been ongoing for 6 months and I am getting more and more concerned as things progress so any advice would be gratefully received.
Thank you again for your time.
 

Nikki J

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Of course you are worried. Since he already had the mri and emg you should have more information soon

please let us know what happens! Will be thinking of you
 

Bestfriends14

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Your husband does have some worrying symptoms, however, there are other things that can cause foot drop. Definitely update once you have received the summary/conclusion portion of his EMG. Virtual hugs to you while you await results.
 

Pumpkin

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Thank you, I will update once we have results. Best wishes to all.
 

Pumpkin

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Unfortunately, it has been confirmed by the neurologist as a ‘working diagnosis’ of MND, they have ruled out everything else at this stage and saw further progression in weakness during the recent clinical exam since last one at end of November. The EMG showed abnormalities in leg, arm and abdominal muscles. MRI, NCS and bloods normal. He is being sent for a second opinion (standard procedure in UK) but has been started on riluazole and the support teams have been activated. My partner is doing well considering. I am struggling to concentrate at work and just want to spend all my time with him 😢

Sorry, I should have added ALS MND, there is both upper and lower involvement.
 

Nikki J

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I am very sorry. Even though you expected it it is a terrible shock.

if you have any questions or need support feel free to start a post in current caregivers or newly diagnosed
 

Bestfriends14

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I'm so very sorry, Pumpkin. When you initially posted, I was really hoping it would point to some thing else.

This is a very supportive community, so please don't hesitate to ask anything. We are here to help in any way.
 

PiratesWife

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Pumpkin,
I’m so sorry to hear that you and I are on the same journey, my 47 year old husband was just diagnosed at the beginning of January, I know exactly what you mean about wanting to spend all your time with him. Sometimes I do the math and count the days that we might have left together and being any where else but with him seems like a waste of time I will never get back.

Im here if you ever want to talk to someone who is going through it too, I know how isolating this experience has been for me, just walking around in the world like you are ok. seems like a sham when you want to scream … I try to hold on to some hope for future treatments that may come in time for us but it all seems so daunting. A future of medications, appointments, paperwork and hard conversations.
When I go on this forum and see the posts “could this be ALS” and I remember pouring over them and worrying… those seem like the good times now. Im sure I will one day look back on the newly diagnosed posts and think the same thing.
 

lgelb

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Very sorry to hear, Pumpkin. Whatever support we can provide, you have.

PW, do yourself a favor and don't add up days. The horizon is expanding as new treatments and better strategies become available. Live the life you're in, as fully as you can, until you can't.
 
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