Old 02-20-2018, 04:18 AM #1 (permalink)
New Member
 
Join Date: 2016
City: London
State: London
Country: Uk
Interest: I am interested in learning about ALS/MND.
Posts: 98
Sidney is on a distinguished road
Sidney Sidney is offline
New Member
Join Date: 2016
City: London
State: London
Country: Uk
Interest: I am interested in learning about ALS/MND.
Posts: 98
Sidney is on a distinguished road
Default My latest Emg and apologies in advance.

Hi. I realise I have posted a lot and asked a lot of questions so apologies.

You have been so kind to answer. It is sincerely appreciated and I haven't been back for six months because I wanted to resist bothering you.

I am however still in diagnostic limbo after 2 and a half years. I stated that sensory/motor/autonomic polyneuropathy was the latest diagnosis but I keep getting asked back for tests as the neuros aren't sure .To be clear I don't request these tests.

My latest Emg has +2 fibrillations and and psw in the calves. This has been consistent for about 18 months.

My question and this may be naive is can you have this level of denervation and it not be als?

I notice when you counsel about als that you always ask about psw and fibs.

Also 'clean emg equals no als'.

Mine obviously is consistently 'dirty'.

Still have 24 fasics ,tendonopathy,thinning of leg and arm muscles, breathing problems at night which are probably apnoea..

Positives are no clinical weakness ,no babinski and neuros say that because denervation hasn't gone above calf level this is a positive..

Can I politely ask you for your observations particularly on the emg results?.

I do understand your frustrations at anxiety driven posts on this forum.

I am way past that and just tired of the limbo.

Thanks in hopeful anticipation.

Sid.
Sidney is offline  
Old 02-20-2018, 06:42 AM #2 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,437
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,437
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: My latest Emg and apologies in advance.

It is true that not having signs of acute denervation on EMG means no ALS but the reverse is not true. Having fibs/ psws on EMG does not automatically mean ALS.

You need to be talking to your doctor about this. ALS is a progressive disease and you are not showing progression by your own report. I don’t know what else they are seeing on the EMG and what is on your ncs but it apparently does not add up to lower motor neuron disease. Your exam apparently does not show upper motor neuron findings.

You say no clinical weakness which is the hallmark of ALS

Are you being seen at Kings?

I hope you are now using your cpap at night.

I do understand you are frustrated and frightened and have real issues. Speaking frankly with the doctor about your fears and asking again how long it is going to take for them to rule out MND with a stable EMG is your right
Nikki J is offline  
Old 02-20-2018, 07:52 AM #3 (permalink)
New Member
 
Join Date: 2016
City: London
State: London
Country: Uk
Interest: I am interested in learning about ALS/MND.
Posts: 98
Sidney is on a distinguished road
Sidney Sidney is offline
New Member
Join Date: 2016
City: London
State: London
Country: Uk
Interest: I am interested in learning about ALS/MND.
Posts: 98
Sidney is on a distinguished road
Default Re: My latest Emg and apologies in advance.

Hi Nikki

Kind and as usual entirely sensible feedback.

I know 'feeling ' isn't als but my legs feel weaker and tendons are stretched to breaking.Fasics have been constant.

It also seems to be more prominent on the left side.

The reasons for no als(so far) seem to be mainly clinical and also the lack of progression in 2 and a half years.

It's a horrible situation(though of course I accept nothing like a confirmed diagnosis).

I know through emg I have denervation but presumably everything else points away from als.

You're right Nikki about talking to the doctors and I have. I originally had bfs with a clean emg now neuropathy with a dirty one.

I won't get a clean one to rule als out although you said 'stable'. Do you mean same level of fibs and psw?

Because I have been the same for a year in that regard.

Thank you so much for taking the time.

Sid
Sidney is offline  
Old 02-20-2018, 08:21 AM #4 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,437
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,437
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: My latest Emg and apologies in advance.

You don’t need a clean EMG to rule out ALS. So called dirty ( abnormal) EMGs can mean many things and if the sum of the clinical picture and the tests show something else then ALS can be said to be ruled out. A clear example would be someone with a spinal issue causing an abnormal EMG. They have what you call a dirty EMG but their other tests and exam add up to a spine problem.

We are not your doctor , we can’t see you and we don’t have your records. You have several times shared bits and pieces but your answer is never going to be here. It lies with the doctors who have all the information. An EMG is just a test. It is an important one but what matters is the clinical picture and lack of progression.

Again speak frankly with the doctors and tell them the effect this is having on your life. There are a fair number of neurological zebras galloping around in neurology practices. You can ask where you are in the herd- are you the I am very worried about you zebra or the I don’t know exactly what is going on but I think you will be ok zebra? Or are you we think we have the answer ( neuropathy) and are just being cautious?
Nikki J is offline  
Old 02-20-2018, 08:58 AM #5 (permalink)
New Member
 
Join Date: 2016
City: London
State: London
Country: Uk
Interest: I am interested in learning about ALS/MND.
Posts: 98
Sidney is on a distinguished road
Sidney Sidney is offline
New Member
Join Date: 2016
City: London
State: London
Country: Uk
Interest: I am interested in learning about ALS/MND.
Posts: 98
Sidney is on a distinguished road
Default Re: My latest Emg and apologies in advance.

Thanks Nikki. Laughed out loud at the Zebras!. I think I’m the middle one. I don’t know exactly what’s going on but I think you ll be ok.Thanks for your time.
Sidney is offline  
Closed Thread

Tags
als, anxiety, arm, back, breathing, breathing problems, clean emg, clinical, denervation, diagnosis, emg, ice, muscles, night, problems, questions, tests, wanted, 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
Assistance in Diagnosis Process (apologies for length) Expectant Father Do I Have ALS? Is This ALS? 7 03-01-2017 10:37 PM
Apologies and fasciculation question pleasehelp Do I Have ALS? Is This ALS? 8 02-16-2017 02:11 PM
Apologies in advance, I have read the stickies GreenPurple Do I Have ALS? Is This ALS? 5 04-10-2014 03:05 PM
no more apologies ysabel Rants & Raves 7 02-28-2013 11:31 PM
Apologies for yet another twitches/ weird feeling in leg jfem4 Do I Have ALS? Is This ALS? 3 02-20-2013 07:54 PM


All times are GMT -5. The time now is 01:19 AM.

 

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