Worried I'm following same footstaps as my uncle

[Bella99]

Hello everyone and thank you for having me.

Lost my uncle to ALS when I was 5. I don't really remember him but I do remember my father's loss of his brother.

I've been having some worrying symptoms. I appreciate you have lots of people on here with health anxiety, however it's my uncles experience i just can't get past.

I saw a neurologist recently. And symptoms started 5 months ago. Weakness found by neuro on right hand side (mild), some hyperreflexia, zero plantar reflex. He sent me for ncs (not emg) and brain and spine scan. All normal.

Am having fasciculations all over but could be anxiety related.

Neuro has no follow up for a few weeks and I'm worrying. Weakness seems to have gotten worse, but I can still do everything. I can stand on tiptoes, walk heel to toe, can still grip. But symptoms now seem to have spread to my arm. Its just a strange sensation of Weakness, cant lift my right toes as high, but I can still do up buttons, walk normally, grip etc. I don't know what ALS at 5 months would look like.


• 05/11 - weakness in leg
• 18/11 - Now in arm + leg.
• 22/11 - heavy feeling in leg. Arm still feels strange.
• 23/11 - right leg feels heavy.
• Ongoing
• 15/01 - weakness in leg still there.
• 18/01 - weakness in leg intensified and thigh muscle mildly now achey
• Ongoing
• 28/02 - Weakness in thigh down into lower leg
• 12/03 - weakness and strange feeling in arm/leg still there
• Ongoing

I just can't seem to get past the familial link and am falling down a rabbit hole. I don't think it helps that this is the first thing my father worries about too, as he was very close to his brother.

So I guess I am asking for reassurance. I feel guilty for even posting here but I do feel like I've grown up with a father who worries about it, so I need to reassure him as much as myself.

Sending you all best wishes.

 

[Nikki J]

To address the genetics for you to carry a mutation your father must be an asymptomatic carrier in spite of now presumably being much older than his brother was. Also one of your grandparents would have been a carrier as well. I am sorry that your father worries about this enough that you know this. While it is common for close relatives to worry ( usually unnecessarily as most ALS is not related to a FALS mutation) they shouldn’t pass the worry to their children unless it has been shown genetic - then it becomes necessary medical information

 

[Bella99]

Thank you. I think deep down i know it is likely functional or anxiety related but I can't help but worry until I've been told my symptoms don't fit.

 

[Nikki J]

You speak of weakness yet no loss of function. You also say heaviness which is a feeling. ALS weakness is inability to do something. My sister’s ALS started with inability to do up a button. By month five that hand was an atrophied claw. She had a fairly average progression. Ultraslow me started with ankle but even I by month five lost heel and toe walk on that foot

 

[Bella99]

I'm in duch and awful feedback loop. I'm really low and anxious. They findings when I saw neuro were;

normal eye movements
normal fundoscopy
normal face sensitivity
normal tongue
Negative Lhermitte sign
upper extremities reflexes are 1+
upper extremities muscle tone and power are normal
No weakness for shoulder abduction, elbow flexion, or wrist extension
lower extremities knee jerks are 2+ (mild hyperreflexia)
Ankle jerks are 1+
Plantar reflexes are mute/absent
Mild weakness for hip flexion 4+/5, knee extension and dorsal and plantar flexion of the right leg
no weakness of the left leg
No change in skin sensitivity
No focal neurology

I just feel so convinced. I've never suffered from anxiety like this before.

Thank you kind folk who have taken time to respond.

I don't know how to cope with this anxiety. I cant put my big toe under my toe next to it anymore. My tongue is fasciculating. I cant stop crying. I cant see neuro for months. Ive got random twitches everywhere. Im praying it's all anxiety but im so not convinced. I just don't know what to do anymore. I'm a single mum and am scared.

 

[lgelb]

Nothing on this exam is any kind of slam dunk for ALS. What did the doctor say in terms of next steps?

 

[Bella99]

He booked me in for NCS and MRI which were both clear. Haven't heard anything since and follow up could be in 3/4 months from now.

My right calf has also shrunk, GP (friend) has confirmed its smaller than left. But weakness still quite mild.