History Repeating?

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KeithG

New member
Joined
Nov 4, 2020
Messages
2
Reason
Lost a loved one
Diagnosis
00/0000
Country
UK
State
NY
City
Leeds
Hi All

Hope you can help, I need some advice, I lost my father to MND (ALS) in December last year (2019). I have been having these symptoms since October 2019 these include:

  • Muscle atrophy left arm (confirmed by GP)
  • Pain in knuckles left hand
  • Discomfort in shoulder (started to lose muscle)
  • Tremor in finger/thumb
  • Muscle atrophy left thigh (confirmed by GP)
  • Aches/pains in muscles in both arms
  • Twitching in arms/body/legs
  • Fatigue in both arms/legs
  • Stiffness/cramps in feet/calf
I have been to the my GP numerous times had lots of blood tests (all clear)

Had strength assessment all fine.

They did confirm the atrophy in my arm and in my leg this is slowly getting worse. My arm more so , in a few months I don't think I am going to be able to use it if it continues to lose more muscle.

My last visit was about 2 weeks ago, I was treated for a nerve issue in my left arm (tennis/golf elbow) , given a steroid injection that has not helped.

I've tried to get referred to the neurologist but with covid there expecting this to take months, so are persuing other possible causes.

my father went through a similar situation where he had several tests all clear, no weakness etc ..It wasn't till about 18months after his first visit to the GP when his leg/arm started to fail.

so what I am asking what do you think the chances of history repeating it's self here?

please give me you thoughts!
 
How old are you? How old was your father? Did anyone else in that bloodline have a neurodegenerative disease? If so age and relationship?

atrophy preceding weakness is not the usual way ALS works. If there are no other affected family members your LIFETIME risk is about 1 in 100 Your risk a generation younger than your father was is considerably lower

aches, pains, tremor are not usual presenting symptoms cramps and twitches are very non specific. So is atrophy really.
 
Hi Nikki, Thank you for the reply

I am 38 and my father was 60 when he died.
No other cases of MND in the family, it was looked into during my father's diagnosis.
 
Looked into? As in history reviewed? Was there any genetic testing? If there was and it was negative for c9orf72 it drops your risk even lower
 
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