Old 05-14-2016, 04:33 PM #31 (permalink)
New Member
 
Join Date: 2016
City: cave junction
State: Oregon
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 22
merrs is on a distinguished road
merrs merrs is offline
New Member
Join Date: 2016
City: cave junction
State: Oregon
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 22
merrs is on a distinguished road
Default Re: hoping to be wrong

I requested them. I pick them up on monday. I don't understand what you mean by "makes me think you don't know?" At this point the only diagnosis is muscle weakness and shortness of breath(also hypermobility, autonomic dysfunction, anterolisthesis aand radiculopathy but these are older).
merrs is offline  
Old 05-14-2016, 04:36 PM #32 (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: 5,638
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: 5,638
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: hoping to be wrong

That you don't know what it said to cause the pcp to recommend ssdi. Good you are getting the notes
Nikki J is offline  
Old 05-14-2016, 04:49 PM #33 (permalink)
New Member
 
Join Date: 2016
City: cave junction
State: Oregon
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 22
merrs is on a distinguished road
merrs merrs is offline
New Member
Join Date: 2016
City: cave junction
State: Oregon
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 22
merrs is on a distinguished road
Default Re: hoping to be wrong

I don't know what it said and my pcp said it was confusing. I had asked for copied at the end of neuro visit but he stated that they wouldn't be ready for a few days but I mentioned my appointment with pcp on fridays I guess he made sure they were available to him but I don't know for sure. Thanks for your response.I do know that the last time I saw my pcp was 4 months ago for backpain and leg troubles and now I can barely walk and my hands are having issues.
merrs is offline  
Old 05-17-2016, 02:02 PM #34 (permalink)
New Member
 
Join Date: 2016
City: cave junction
State: Oregon
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 22
merrs is on a distinguished road
merrs merrs is offline
New Member
Join Date: 2016
City: cave junction
State: Oregon
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 22
merrs is on a distinguished road
Default Re: hoping to be wrong

Neuro notes confirms distal weakness in upper and lower extremities.(all figures in these areas in the 3s) some weakness proximal lower extremities(4s). Scissoring gait with right leg steppage. When he told me to flex my big toe up it moved downward slightly instead(I can't make heads or tails of that). Positive for tremor but no clonus). Full strenghth tongue. Reflexes look ok according to notes but he questioned the hyperreflex in my knee reflexes during exam(asked if i had always been hypereflexive there). Anyway sooo I wait for EMG. My main solace is that the weakness is now bilateral and so maybe it must be something else. If anyone has any suggestions as to an "else" I am most open. I have looked upthe ones in the stickies and none of them quite fit....though I have friends that insist it could be chiari malformation or tethered cord however sensation is completely intact. Thanks everyone.
merrs is offline  
Thanks from
Terimolinaro (05-20-2016)
Old 05-24-2016, 09:45 PM #35 (permalink)
New Member
 
Join Date: 2016
City: cave junction
State: Oregon
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 22
merrs is on a distinguished road
merrs merrs is offline
New Member
Join Date: 2016
City: cave junction
State: Oregon
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 22
merrs is on a distinguished road
Default Re: hoping to be wrong

Well....very nervous but glad too. The neurology office called me last night and got my EMG sceduled for tomorrow morning. I hope to have an answer . Thanks everyone. I will let you know.
merrs is offline  
Old 05-25-2016, 07:37 AM #36 (permalink)
Very Helpful Member
 
Join Date: 2016
City: Cleveland
State: Oklahoma
Country: US
Diagnosed: 10/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1,169
soonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to behold
soonerwife soonerwife is offline
Very Helpful Member
Join Date: 2016
City: Cleveland
State: Oklahoma
Country: US
Diagnosed: 10/2015
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1,169
soonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to behold
Default Re: hoping to be wrong

Good luck merrs!
soonerwife is offline  
Thanks from
merrs (05-25-2016)
Old 05-31-2016, 06:49 PM #37 (permalink)
New Member
 
Join Date: 2016
City: cave junction
State: Oregon
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 22
merrs is on a distinguished road
merrs merrs is offline
New Member
Join Date: 2016
City: cave junction
State: Oregon
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 22
merrs is on a distinguished road
Default Re: hoping to be wrong

Thank you all for the support. EMG results point to myopathy....something in the calcium/sodium/potassium channels most likely. Just wanted to let you all know.
Merrs
merrs is offline  
Old 05-31-2016, 06:55 PM #38 (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: 1,108
ShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud of
♥ 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: 1,108
ShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud ofShiftKicker has much to be proud of
Default Re: hoping to be wrong

Thanks for the update. I sincerely hope your doctors will now be able to provide more info and help with management of your symptoms. While it's not totally a benign and simple diagnosis, I'm hoping there's some relief in knowing.

Absolute best wishes to you.

Fiona
ShiftKicker is offline  
Thanks from
merrs (05-31-2016)
Old 05-31-2016, 06:57 PM #39 (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: 5,638
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: 5,638
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: hoping to be wrong

Thank you for letting us know. It is very helpful as you illustrate very well the point we often try to make that one can have clinical weakness, atrophy and twitches and have something other than ALS. Wishing you the best as you address this issue
Nikki J is offline  
Thanks from
merrs (05-31-2016)
Closed Thread

Tags
cramps, fasciculations, hip, lift, mri, muscle, muscles, neurologist, night, tongue, urgent, wrist, wrong


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
New here and hoping for some good suggestions HeatherG People With ALS - "PALS" 18 10-14-2015 03:11 AM
Hoping to share now... fionae Newly Diagnosed 27 10-02-2015 04:28 AM
Hoping this is something else orangecorpsman Do I Have ALS? Is This ALS? 5 07-05-2013 04:21 PM
Hoping For the Best MKM7 Do I Have ALS? Is This ALS? 4 05-16-2013 03:03 PM
New Here - Hoping to help and get help Steve730 Do I Have ALS? Is This ALS? 10 11-12-2012 06:09 PM
Hoping for a cure hoosier454 People With ALS - "PALS" 14 01-30-2012 09:33 PM
Hoping for answers Sammantha Do I Have ALS? Is This ALS? 6 05-22-2009 10:29 PM
info for hoping olly General Discussion About PLS 21 03-20-2008 08:09 PM
Realllly hoping the docs are wrong flora Do I Have ALS? Is This ALS? 52 11-22-2007 01:47 AM
hoping for suggestions VSTal General Discussion About ALS/MND 1 11-26-2006 01:11 PM


All times are GMT -5. The time now is 06:47 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