Old 06-18-2017, 03:46 AM #1 (permalink)
Lizzypip68's Avatar
New Member (Say Hi)
 
Join Date: 2017
City: Bournmouth
State: Dorset
Country: UK
Interest: I am interested in learning about ALS/MND.
Posts: 2
Lizzypip68 is on a distinguished road
Lizzypip68 Lizzypip68 is offline
New Member (Say Hi)
Lizzypip68's Avatar
Join Date: 2017
City: Bournmouth
State: Dorset
Country: UK
Interest: I am interested in learning about ALS/MND.
Posts: 2
Lizzypip68 is on a distinguished road
Default Does this sound like ALS?

Hi everyone, I'm very new to this forum and would very much appreciate any advice you could give me regarding my ongoing symptoms....
I first noticed fasciculations in my left calf 3 months ago and within a week was aware of them pretty much everywhere. In truth I think they have been going on for quite a while as I've been aware of odd buzzing sensations for ages but hadn't realised what it was until putting on a pair of shorts for the first time this year when I noticed the calf fasciculations.
I visited my GP who did a brief strength test, acknowledged the presence of fasciculations but dismissed my concerns as stress related. after a few weeks of increasing symptoms I decided to go and see a Neurologist privately. He talked to me at length then examined me on a couch where he watched my legs and arms whilst tapping them periodically to check reflexes. At the end of the appointment he diagnosed BFS saying my legs were strong and he was 99% certain it was BFS but suggested follow up nerve conduction tests.
Since this time I have noticed atrophy in my left calf (which measures one inch smaller than the right) and also at the back of my ankle on this same leg. I went for the nerve conduction tests last week and the atrophy was noted by the technician and also I struggled to complete the test due to severe cramp every time I had to push my foot down. At the end of the test he advised that the result would be 7-10 days but that he had noted the fasciculations in left calf and occasional ones in the right side. He asked about previous back problems (2 microdiscectomys 9 years ago) and said that some symptoms may be as a result of this. I asked if I should stop worrying about MND and he hesitated for a few seconds before finally saying yes.
Do my symptoms sound like MND? I have read that it can't be BFS if you have atrophy but also at this point I do not have any clinical weakness and wonder if that would show by now with MND? I also have pain throughout my left leg from the hip to the ankle which is constant and a buzzing sensation in my leg and foot. Any insight would be greatly appreciated and thank you for taking the time to read this.
Lizzypip68 is offline   Reply With QuoteReply With Quote
Old 06-18-2017, 04:53 AM #2 (permalink)
Atsugi's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 4,447
Atsugi has much to be proud ofAtsugi has much to be proud ofAtsugi has much to be proud ofAtsugi has much to be proud ofAtsugi has much to be proud ofAtsugi has much to be proud ofAtsugi has much to be proud ofAtsugi has much to be proud ofAtsugi has much to be proud ofAtsugi has much to be proud of
♥ Atsugi Atsugi is offline
Extremely Helpful Member
Forum Moderator

Atsugi's Avatar
Join Date: 2011
City: Orlando
State: Florida
Country: US
Diagnosed: 12/2010
Interest: I lost a loved one to ALS/MND.
Posts: 4,447
Atsugi has much to be proud ofAtsugi has much to be proud ofAtsugi has much to be proud ofAtsugi has much to be proud ofAtsugi has much to be proud ofAtsugi has much to be proud ofAtsugi has much to be proud ofAtsugi has much to be proud ofAtsugi has much to be proud ofAtsugi has much to be proud of
Default Re: Does this sound like ALS?

I wouldn't leap to the rare fatal disease based on on what you wrote. The GP and the neurologist considered it, but didn't order an EMG to look for the type of damage that MNDs do to the nerves.

In ALS, first there is damage to the nerves in the brain and brain stem, and then later the nerve can't send signals to its corresponding muscles, so the muscle doesn't work anymore, forever.

If you are still concerned you might have a fatal disease, then run, don't walk, to get an immediate appointment with a world-class specialist. But your post didn't sound like MND.

Last edited by Atsugi : 06-18-2017 at 05:00 AM
Atsugi is offline   Reply With QuoteReply With Quote
Thanks from
Lizzypip68 (06-18-2017)
Old 06-18-2017, 12:47 PM #3 (permalink)
Lizzypip68's Avatar
New Member (Say Hi)
 
Join Date: 2017
City: Bournmouth
State: Dorset
Country: UK
Interest: I am interested in learning about ALS/MND.
Posts: 2
Lizzypip68 is on a distinguished road
Lizzypip68 Lizzypip68 is offline
New Member (Say Hi)
Lizzypip68's Avatar
Join Date: 2017
City: Bournmouth
State: Dorset
Country: UK
Interest: I am interested in learning about ALS/MND.
Posts: 2
Lizzypip68 is on a distinguished road
Default Re: Does this sound like ALS?

Thank you for your reply. I did have an EMG along with nerve conduction tests but have no results as yet. The neurologist recommended tests as confirmation of his provisional diagnosis of BFS but the calf and ankle atrophy was not noted by him although the man who performed the nerve tests/EMG three weeks later spotted it straight away. I'm therefore confused as to why the neurologist did not mention it despite looking at my legs - I had noted it at this point but because the neurologist did not comment on it I had decided that it must be insignificant. Following my EMG/nerve tests and the technicians comments I am now very concerned as to the significance of this although, as previously stated, he did say that I should stop worrying about ALS - hopefully that means he didn't pick up anything else that was worrisome.
I really want to know if it was ALS related atrophy would I have clinical weakness by now or could the atrophy come first? Any insight would be very much appreciated.
Lizzypip68 is offline   Reply With QuoteReply With Quote
Old 06-18-2017, 01:35 PM #4 (permalink)
ShiftKicker's Avatar
Moderator
Forum Moderator
 
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 881
ShiftKicker is a splendid one to beholdShiftKicker is a splendid one to beholdShiftKicker is a splendid one to beholdShiftKicker is a splendid one to beholdShiftKicker is a splendid one to beholdShiftKicker is a splendid one to behold
♥ ShiftKicker ShiftKicker is offline
Moderator
Forum Moderator

ShiftKicker's Avatar
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 881
ShiftKicker is a splendid one to beholdShiftKicker is a splendid one to beholdShiftKicker is a splendid one to beholdShiftKicker is a splendid one to beholdShiftKicker is a splendid one to beholdShiftKicker is a splendid one to behold
Default Re: Does this sound like ALS?

There really is a difference between atrophy and normal variation in muscle size from side to side. Unless you had a baseline measurement of your muscle sizes from months or years ago to compare, it's highly likely the size difference is natural. People are generally not symmetrical. Even at my absolute fittest time, I had a 2" difference between my left and right quadriceps muscles. Some people have variations of foot size difference of 2 or 3 sizes. Arm and leg length vary all the time too. Again, you'd have to see a change over time in order to be concerned about a size difference. Atrophy can be detected via EMG, as atrophy means a muscle is not getting the same volume of signal (if any at all) and will show via electrodiagnostic testing. So, the technician may have noted a size difference, but the EMG would show if there's atrophy and not just normal variation.
ShiftKicker is offline   Reply With QuoteReply With Quote
Reply

Tags
advice, als, als?, atrophy, back, bfs, clinical, diagnosed, fasciculations, foot, hip, mnd, neurologist, pain, problems, stress, symptoms, test, tests, weakness


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Does this sound like als? Jonathonw Do I Have ALS? Is This ALS? 6 04-17-2017 07:54 PM
Does this sound like ALS? emzie1007 Do I Have Lyme Disease? 13 08-22-2014 11:21 AM
Does this sound like PLS? bluedog General Discussion About PLS 9 12-06-2013 01:02 PM
does this sound like ALS HELP PLEASE? mommy132617 Newly Diagnosed 10 09-30-2013 08:08 AM
Is this als? If not what does it sound like? Brynne8 Do I Have ALS? Is This ALS? 6 06-23-2013 11:04 PM


All times are GMT -5. The time now is 12:52 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016