Old 02-05-2012, 01:04 PM #1 (permalink)
New Member
 
Join Date: 2011
City: London
State: England
Country: UK
Interest: I am interested in learning about ALS/MND.
Posts: 16
victor jara is on a distinguished road
victor jara victor jara is offline
New Member
Join Date: 2011
City: London
State: England
Country: UK
Interest: I am interested in learning about ALS/MND.
Posts: 16
victor jara is on a distinguished road
Default Undiagnosed/ symptoms 1Year

Hi Folks, 44yr old man

I started over a year ago to notice strange sensation in left hand when typing at night. Then both muscle atrophy and weakness when doing tasks like driving(holding steering wheel), holding phone and fatigue when doing repetitive tasks with left hand ,but also right. Also would have like dull ache, cramp and sometime burning sensation in forearm.Tended to be worse at night in beginning but now comes and goes at anytime in day.

Was midiagnosed with carpal tunnel syndrome last April and underwent 2 MRI scan, Nerve study and emg . One mri diagnosed sciatica (Had microdiscectomy for leg pain and numbness in November) . the other tests showed nothing abnormal. I have seen two neurolgists. The first one said 99% no ALS based on emg and nerve study and thought symptoms stress related.. I asked for a 2nd opinnion and saw a motor nerve specialist in London . She did a thorough examination and said the strength was within normal limits in my arms and agreed with first neuro that she did not think ALS/MND.

This was in October and I had accepted that until last few weeks when started to experience difficulty chewing food. No problems swallowing but jaw feels fatigued easily. Also on occasions feel a little breathless when talking.My Dr has said I am suffering from anxiety and I think this is true, however it feels like the chicken and egg. My main worry is that I have significant symptoms in my arm and now eating that have not been explained. The symptoms in my arm have remained consistent pretty much since onset about a year ago with them not seeming to be getting worse.

If not ALS is it possible could be someting auto-imune,metabolic? etc. I have had two lots of blood tests last year with NAD. Any thoughts would be appreciated.
victor jara is offline  
Old 02-05-2012, 01:09 PM #2 (permalink)
New Member
 
Join Date: 2011
City: London
State: England
Country: UK
Interest: I am interested in learning about ALS/MND.
Posts: 16
victor jara is on a distinguished road
victor jara victor jara is offline
New Member
Join Date: 2011
City: London
State: England
Country: UK
Interest: I am interested in learning about ALS/MND.
Posts: 16
victor jara is on a distinguished road
Default Re: Undiagnosed/ symptoms 1Year

One other point. I used to play a lot of squash and had a powerful left arm and the muscle atrophy was very marked.
victor jara is offline  
Old 02-05-2012, 03:00 PM #3 (permalink)
trfogey's Avatar
Extremely Helpful Member
 
Join Date: 2008
City: Raleigh
State: NC
Country: US
Diagnosed: 07/2007
Interest: I have been diagnosed with ALS.
Posts: 2,042
trfogey is on a very distinguished road
trfogey trfogey is offline
Extremely Helpful Member
trfogey's Avatar
Join Date: 2008
City: Raleigh
State: NC
Country: US
Diagnosed: 07/2007
Interest: I have been diagnosed with ALS.
Posts: 2,042
trfogey is on a very distinguished road
Default Re: Undiagnosed/ symptoms 1Year

You don't have ALS. Two neurologists have told you that and your new chewing problem doesn't suggest that. What you have -- other than a large amount of anxiety, problems with comprehending medical information that you've been reading, and a vivid imagination -- we have no idea. That's what your doctors are for. Start listening to them.
trfogey is offline  
Old 02-05-2012, 03:12 PM #4 (permalink)
Member
 
Join Date: 2010
City: Highland
State: CA
Country: US
Diagnosed: 04/2011
Interest: I have been diagnosed with ALS.
Posts: 440
kmendsley is on a distinguished road
kmendsley kmendsley is offline
Member
Join Date: 2010
City: Highland
State: CA
Country: US
Diagnosed: 04/2011
Interest: I have been diagnosed with ALS.
Posts: 440
kmendsley is on a distinguished road
Default Re: Undiagnosed/ symptoms 1Year

Is it possible that something else is going on.....yes, of course.

Do You have ALS- No, you don't. 2 neurologists have confirmed that you don't...move on to find another reason for your symptoms.

Do yourself a favor, and get a therapist for a month. See if it helps...it should at least reduce your anxiety...and best thing is that they will listen to all of your complaints with an unbiased view.

Also, were you misdiagnosed with carpel tunnel...did your GP tell you that it was a misdiagnosis...or are you stating that it was a misdiagnosis because you are so set on it being something worse?

Good luck to you.
kmendsley is offline  
Old 02-06-2012, 03:09 AM #5 (permalink)
New Member
 
Join Date: 2011
City: London
State: England
Country: UK
Interest: I am interested in learning about ALS/MND.
Posts: 16
victor jara is on a distinguished road
victor jara victor jara is offline
New Member
Join Date: 2011
City: London
State: England
Country: UK
Interest: I am interested in learning about ALS/MND.
Posts: 16
victor jara is on a distinguished road
Default Re: Undiagnosed/ symptoms 1Year

Hi Kmendsley, The nerve stady and emg indicated I do not have carapal tunnel. I did go ahead with the decompression surgery in May without any improvement.
Thanks for your comments and I wish you well in your battle with ALS if battle is the right word.
victor jara is offline  
Old 03-07-2012, 12:44 PM #6 (permalink)
New Member
 
Join Date: 2011
City: London
State: England
Country: UK
Interest: I am interested in learning about ALS/MND.
Posts: 16
victor jara is on a distinguished road
victor jara victor jara is offline
New Member
Join Date: 2011
City: London
State: England
Country: UK
Interest: I am interested in learning about ALS/MND.
Posts: 16
victor jara is on a distinguished road
Default Re: Undiagnosed/ symptoms 1Year

Sorry to come back again but just today noticed twitching in my quad muscle above knee. I have tried to mut als out of my mind but with the weakness in facial muscles, smiling chewing etc it has come back . I feel really sick with anxiety.

I know I had all those tests last year but is it common that you can have a clean emg/nerve study and then later be diagnosed. My GP has taken a fresh lot of bloods last week and am waiting results.
victor jara is offline  
Old 03-07-2012, 12:50 PM #7 (permalink)
Member
 
Join Date: 2010
City: Highland
State: CA
Country: US
Diagnosed: 04/2011
Interest: I have been diagnosed with ALS.
Posts: 440
kmendsley is on a distinguished road
kmendsley kmendsley is offline
Member
Join Date: 2010
City: Highland
State: CA
Country: US
Diagnosed: 04/2011
Interest: I have been diagnosed with ALS.
Posts: 440
kmendsley is on a distinguished road
Default Re: Undiagnosed/ symptoms 1Year

Victor Jara,
You wrote "weakness in facial musles, smiling chewing etc it has come back"- This points away from ALS. ALS does not remit and relapse...ie. doesn't stay, go away, and come back.

Did you take up the suggestion on seeing the therapist?

Also, your EMG would have been 'dirty' before symptoms even arose...so no...it wouldn't be different a year later to answer your question.

Just wait for blood tests to come back...you can have something as simple as a vitamin deficiency. Your symptoms, again...and still, do not point to ALS.

Good luck to you.
kmendsley is offline  
Old 03-07-2012, 03:11 PM #8 (permalink)
New Member
 
Join Date: 2011
City: London
State: England
Country: UK
Interest: I am interested in learning about ALS/MND.
Posts: 16
victor jara is on a distinguished road
victor jara victor jara is offline
New Member
Join Date: 2011
City: London
State: England
Country: UK
Interest: I am interested in learning about ALS/MND.
Posts: 16
victor jara is on a distinguished road
Default Re: Undiagnosed/ symptoms 1Year

Thanks Kmendsley. I am waiting to see a therapist for anxiety and have been started on some meds.

I have found since january that the weakness in the facial muscles has been fairly constant but somedays worse than others. I am finding its more affected by facial expressions smiling etc.

Thanks again for replying and I wish you well in your battle with the illness.
victor jara is offline  
Old 03-07-2012, 03:27 PM #9 (permalink)
Very Helpful Member
 
Join Date: 2012
City: Emerald
State: Kansas
Country: US
Diagnosed: 11/2008
Interest: Yesterday was the time of our lives
Posts: 1,019
Toto's Dorothy is on a distinguished road
Toto's Dorothy Toto's Dorothy is offline
Very Helpful Member
Join Date: 2012
City: Emerald
State: Kansas
Country: US
Diagnosed: 11/2008
Interest: Yesterday was the time of our lives
Posts: 1,019
Toto's Dorothy is on a distinguished road
Default Re: Undiagnosed/ symptoms 1Year

You need to quit oogling dr go og le let your doctors figure it out
Toto's Dorothy is offline  
Closed Thread

Tags
ache, anxiety, atrophy, burning, diagnosed, driving, eating, emg, fatigue, food, ice, leg pain, mnd, mri, muscle, night, onset, pain, problems, stress, swallowing, symptoms, tests, undiagnosed, 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
Undiagnosed MND CRR10 Newly Diagnosed 5 04-21-2013 01:04 PM
Undiagnosed smv2012 Do I Have ALS? Is This ALS? 5 11-23-2012 01:37 PM
Still undiagnosed harmonyboy74 Do I Have ALS? Is This ALS? 20 10-26-2012 03:25 PM
Have undiagnosed ALS symptoms? Consider Lyme disease! KeyLymePie Lyme Disease Diagnosis 8 07-05-2012 01:47 PM
Undiagnosed todd18 Do I Have ALS? Is This ALS? 7 11-17-2011 05:12 PM
Undiagnosed, but very worried! varacara Do I Have ALS? Is This ALS? 20 01-19-2009 07:20 AM
A few questions from undiagnosed 37 yr old... pablo123 Do I Have ALS? Is This ALS? 3 12-16-2008 10:50 PM
Undiagnosed Bulbar Symptoms Raina General Discussion About PLS 17 09-04-2007 10:31 PM
Undiagnosed with serious symptoms and questions Jamiet General Discussion About ALS/MND 34 12-06-2006 11:44 AM
Undiagnosed sarbux General Discussion About ALS/MND 2 10-19-2004 01:27 PM


All times are GMT -5. The time now is 02:05 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