Old 01-13-2011, 08:39 AM #1
Alexandre Alexandre is offline
Banned
 
Join Date: 2009
City: Paris
State: Paris
Country: FRA
Interest: I am interested in learning about ALS/MND.
Posts: 91
Alexandre is on a distinguished road
Alexandre Alexandre is offline
Banned
Join Date: 2009
City: Paris
State: Paris
Country: FRA
Interest: I am interested in learning about ALS/MND.
Posts: 91
Alexandre is on a distinguished road
Default A lot of questions.

Hi all,

Tomorrow I have an appointment with an ALS specialist after being observed by his assistants in November last year, who believe my progression and symptoms are worrisome for ALS.
Some of you will know I was here on the board a while ago and I was seen by multiple doctors who always said it was no ALS.
I even had an EMG that was normal except from fasciculations however I had atrophy in my right hand. I would like that people who donít take me seriously to not respond please.
I would like to ask some questions about progression being quick, slow, new symptoms etc.

Quick recap:
3 years ago I started to have twitches in my legs that progressed to my arms etc a week later. Since than I got them everywhere. 2 years long it was fascics and cramping (no real Charlie horses) and pain in shoulder, arms that subsided sometimes after weeks or month with a lot of pain killers. MRI spine, brain, blookwork Ė Lyme, all have been tested. I also had a normal EMG with fasciculations 3 years ago.

In December 2009 I noticed a dent in my right hand (first dorsal interosseus) that I never saw before

February 2010: noticed non stop twitching in first dorsal interosseus, also a lot in the other hand

July 2010: started getting pain at my right ankle, severe pain.

August 2010: New EMG done: to my surprise only fasciculations noted. I was confused because I knew there was a dent that did progress, however not very hard. But ofcourse relieved.

November 2010: right foot/ankle still hurting and walking with brace, pain killers, digitorum brevis a lot smaller than other foot also loss of muscle just above ankle (lowest part of leg)
In the clinical they saw the atrophy, brisk reflexes with extension, Hoffman and said I should be seen by the ALS specialist (he was not there at that time and had to wait for a private appointment)

Iíve been trouh a lot of anxiety for the past 3 years so I guess somehow I also suffer from anxiety (disorder?) So my questions are about some symptoms related to ALS or not or progression.

For the record: Iím not saying I have ALS, I will leave it in the hands of the specialist but we know something went wrong during EMG, and as I have being told by people here the EMG is very subjective , not the machine but the errors made by the person who does it.

My situation now:-
1) Right hand: atrophy has progressed but I can still use my hands. Some problems with picking up small items. Atrophy first seen 13 months ago, it has progressed but not extremely.
Question: should it go faster in Ďregularí ALS or is this normal progression?

2)Right foot: Still a lot of pain when walking. Pain killers ease the pain. Friends donít see difference in walking when I take pain killers. Also weird pain in hamstrings. Also my foot often gets caught after a table leg or chair leg, carpet, but I donít fall. But no dragging to see.
Question: it has been 7 months with this pain and akward walking that I feel, can still walk toes and heels. Slow progression?

3)Left hand and leg:
I noticed my muscle (1st dorsal interosseus) in left hand is also getting smaller.
Left leg, ankle gets sore when walking a distance.

4)Breathing: when talking I have to gasp for air. This is not always. But a few times a day.
I donít have sleeping problems, but take Rivortril to sleep better.

5)Talking: I often say words wrong. Mixing letters. Also last week I couldnít not say a specific word. I feel like I Ďslissí more often. Today feeling like slight throat pain

Tongue: I often feel zaps, tickling weird feelings in my tongue. But when I look in the mirror when my tongue is at complete rest in my mouth I see nothing moving. However when I stick it out I can see slight quivering in front of the tongue.

These are some of my symptoms also got : cramping (only 4 big cramps last year), shaking hand muscles when stretching in bed in the morning, twitching all over including lips, abdomen (new), since yesterday tremendous upper back pain left side (weakness?), ...

IF this is ALS what symptoms are related. Could some symptoms be due to anxiety?
Is it Ďnormalí in ALS to have affection in breathing, tongue, both hands and legs before diagnose? Also not one limb has been paralyzed. I still can use everything?
I know itís a long thread but does someone have opinions?
Because IF it would be ALS Iím afraid it will progress quick from this point because it seems to be everywhere.
Does anyone have an insight on muscle wasting progression, my breathing , tongue thing, overall progression?

Thanks
Alexandre is offline  
Old 01-13-2011, 01:21 PM #2
pumpdoc's Avatar
pumpdoc pumpdoc is offline
Member
 
Join Date: 2010
City: San Marcos
State: California
Country: US
Diagnosed: 02/2010
Interest: I have been diagnosed with ALS.
Posts: 129
pumpdoc is on a distinguished road
pumpdoc pumpdoc is offline
Member
pumpdoc's Avatar
Join Date: 2010
City: San Marcos
State: California
Country: US
Diagnosed: 02/2010
Interest: I have been diagnosed with ALS.
Posts: 129
pumpdoc is on a distinguished road
Default Re: A lot of questions.

EMG c;lean=good
pain in foot not ALS
can use all of you limbs digits=not ALS
All of the other i'm sure they will find the problems.
There is no timetable for progression, but i notice mine is slow/fast as in one day i don't have problem, the next i do and when that happens there is no retuern of function.
pumpdoc is offline  
Old 01-13-2011, 05:58 PM #3
trfogey's Avatar
trfogey trfogey is offline
Extremely Helpful Member
 
Join Date: 2008
City: Raleigh
State: NC
Country: US
Diagnosed: 07/2007
Interest: I have been diagnosed with ALS.
Posts: 2,017
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: 2,017
trfogey is on a very distinguished road
Default Re: A lot of questions.

Alexandre,

When you actually get a diagnosis of ALS, it will be possible to talk about your progression and how it compares to other patients with ALS. Until that time, having any kind of discussion of this type with you simply feeds your unwarranted obsession with ALS. I hope this doctor is able to help you with the problems you do have and that you'll find some kind of peace of mind.

To the newer members of the board -- be extremely cautious when you interact with Alexandre. I would strongly recommend that you go back and read as many of his previous posts as you can before spending any significant amount of time interacting with him, just to see what he has been told in the past (often multiple times by multiple people and on multiple occasions). If he won't listen to multiple neurologists who have told him he doesn't have ALS, he probably won't listen to you either and any real information that you do give him will be twisted to feed his obsession. Adding fuel to the fire is not a kind thing to do.
trfogey is offline  
Old 01-13-2011, 06:55 PM #4
Twinsmom's Avatar
Twinsmom Twinsmom is offline
Senior Member
 
Join Date: 2009
City: Miami
State: FL
Country: US
Diagnosed: 07/2009
Interest: My husband has MND/possible ALS
Posts: 604
Twinsmom is on a distinguished road
Twinsmom Twinsmom is offline
Senior Member
Twinsmom's Avatar
Join Date: 2009
City: Miami
State: FL
Country: US
Diagnosed: 07/2009
Interest: My husband has MND/possible ALS
Posts: 604
Twinsmom is on a distinguished road
Default Re: A lot of questions.

Dear Alexandre,

I haven't been on the forum much these past several months, and am sad/sorry to see you are still searching and not given any solid answers. I would encourage you to look at your situation a bit differently. As my husband is living a long diagnostic road as well, hopefully it will give you a healthy perspective to consider.

Like pumpdoc stated, clean EMG= NOT ALS...
There are an obscene number of motor neuron diseases out there, many of which share many of the symptoms you describe. My husband has had dirty EMG's each and every time he has been tested, progressive weakness, cramps and spasms-what he DOESN'T HAVE are upper motor neuron symptoms.

So, while it is very frustrating to not know WHAT is wrong, we find peace and comfort in that they are NOT diagnosing him with ALS. As of now, we have a verbal diagnosis of 'possible Progressive Muscle Atrophy (PMA), but even that is not confirmed yet.

Of course, there is a chance that one day it could be diagnosed, but honestly, I would encourage you to do research on all the other motor neuron diseases out there (and there are many-also rare ones, but NOT ALS to rule out)
Peace,
Melody
Twinsmom is offline  
Old 01-13-2011, 08:57 PM #5
BarryG's Avatar
BarryG BarryG is offline
Extremely Helpful Member
 
Join Date: 2008
City: Hinton
State: Alberta
Country: CA
Diagnosed: 02/2008
Interest: Can't eat, drink or talk but still smiling!
Posts: 2,981
BarryG is on a distinguished road
BarryG BarryG is offline
Extremely Helpful Member
BarryG's Avatar
Join Date: 2008
City: Hinton
State: Alberta
Country: CA
Diagnosed: 02/2008
Interest: Can't eat, drink or talk but still smiling!
Posts: 2,981
BarryG is on a distinguished road
Default Re: A lot of questions.

Heeee's Baaaaack!
BarryG is offline  
Old 01-13-2011, 09:19 PM #6
Twinsmom's Avatar
Twinsmom Twinsmom is offline
Senior Member
 
Join Date: 2009
City: Miami
State: FL
Country: US
Diagnosed: 07/2009
Interest: My husband has MND/possible ALS
Posts: 604
Twinsmom is on a distinguished road
Twinsmom Twinsmom is offline
Senior Member
Twinsmom's Avatar
Join Date: 2009
City: Miami
State: FL
Country: US
Diagnosed: 07/2009
Interest: My husband has MND/possible ALS
Posts: 604
Twinsmom is on a distinguished road
Default Re: A lot of questions.

Barry....made me Laugh OUT LOUD!
Twinsmom is offline  
Old 01-14-2011, 03:06 AM #7
Blizna Blizna is offline
Banned
 
Join Date: 2007
City: Prague
State: CZ
Country: CZ
Interest: Not certain of benign twitching due to anxiety
Posts: 323
Blizna is on a distinguished road
Blizna Blizna is offline
Banned
Join Date: 2007
City: Prague
State: CZ
Country: CZ
Interest: Not certain of benign twitching due to anxiety
Posts: 323
Blizna is on a distinguished road
Default Re: A lot of questions.

Guys, I am sorry but are really cruel and intact. He has atrophy of affected muscle, brisk reflexes, hoffman sign, his neurologists suspects ALS and you WARN others to interact with him? That is so pathetic, this forum should be for support but sometimes I feel everyone who could have atypical form of MND is accused as hypochondriac or liar.
The thing with clean EMG=no ALS has been discussed here many times. Yes, if the EMG is done properly and thoroughly then its probably not ALS AT THE TIME. Still there are some whose EMG was clean initially and later dirty.
Reactions like "hees back" when somebody wants to just discuss his troubles and feel terribly scared as his doctor suspects ALS...just idiotic, I cannot believe how dumb some people can be regarding the others feeling.

I too warn others - do not post anything on this forum unless you have definite ALS diagnosis. Or else this is what you get...
Blizna is offline  
Old 01-14-2011, 07:35 AM #8
Danijela's Avatar
Danijela Danijela is offline
Senior Member
 
Join Date: 2008
City: Bolton
State: UK
Country: UK
Diagnosed: 11/2008
Interest: I have been diagnosed with ALS.
Posts: 663
Danijela is on a distinguished road
Danijela Danijela is offline
Senior Member
Danijela's Avatar
Join Date: 2008
City: Bolton
State: UK
Country: UK
Diagnosed: 11/2008
Interest: I have been diagnosed with ALS.
Posts: 663
Danijela is on a distinguished road
Default Re: A lot of questions.

"For the record: I’m not saying I have ALS, I will leave it in the hands of the specialist but we know something went wrong during EMG, and as I have being told by people here the EMG is very subjective , not the machine but the errors made by the person who does it. "

What exactly went wrong during your EMG? Do you feel it was performed incorrectly? If so, ask for a correct procedure and make sure it is performed correctly.

"August 2010: New EMG done: to my surprise only fasciculations noted. I was confused because I knew there was a dent that did progress, however not very hard. But ofcourse relieved."

Are you trying to suggest that an EMG would pick up 'the dent'? If only fasciculations were noted that is good news, and if there is a 'dent' something else, other than ALS, must be causing it.
Danijela is offline  
Old 01-14-2011, 09:10 AM #9
pumpdoc's Avatar
pumpdoc pumpdoc is offline
Member
 
Join Date: 2010
City: San Marcos
State: California
Country: US
Diagnosed: 02/2010
Interest: I have been diagnosed with ALS.
Posts: 129
pumpdoc is on a distinguished road
pumpdoc pumpdoc is offline
Member
pumpdoc's Avatar
Join Date: 2010
City: San Marcos
State: California
Country: US
Diagnosed: 02/2010
Interest: I have been diagnosed with ALS.
Posts: 129
pumpdoc is on a distinguished road
Default Re: A lot of questions.

Quote:
Originally Posted by Blizna View Post
Guys, I am sorry but are really cruel and intact. He has atrophy of affected muscle, brisk reflexes, hoffman sign, his neurologists suspects ALS and you WARN others to interact with him? That is so pathetic, this forum should be for support but sometimes I feel everyone who could have atypical form of MND is accused as hypochondriac or liar.
The thing with clean EMG=no ALS has been discussed here many times. Yes, if the EMG is done properly and thoroughly then its probably not ALS AT THE TIME. Still there are some whose EMG was clean initially and later dirty.
Reactions like "hees back" when somebody wants to just discuss his troubles and feel terribly scared as his doctor suspects ALS...just idiotic, I cannot believe how dumb some people can be regarding the others feeling.

I too warn others - do not post anything on this forum unless you have definite ALS diagnosis. Or else this is what you get...
Well it's a cruel disease for those of us who have it and when people come here repeatedly after being told that their signs are not that of ALS, the best thing to do s to tell them to stay away and stop worrying.
pumpdoc is offline  
Old 01-14-2011, 10:49 AM #10
wright's Avatar
wright wright is offline
Very Helpful Member
 
Join Date: 2008
City: xxxx
State: xx
Country: US
Interest: I am here to lend a helping hand
Posts: 1,160
wright is on a distinguished road
wright wright is offline
Very Helpful Member
wright's Avatar
Join Date: 2008
City: xxxx
State: xx
Country: US
Interest: I am here to lend a helping hand
Posts: 1,160
wright is on a distinguished road
Default Re: A lot of questions.

I'm not going to make any comments until Alexandre comes back and tells us what his neuro says. I am going to comment about something you said, Blizna:

"The thing with clean EMG=no ALS has been discussed here many times. Yes, if the EMG is done properly and thoroughly then its probably not ALS AT THE TIME. Still there are some whose EMG was clean initially and later dirty."

That is not entirely correct. To be more thorough with the explanation:

If the EMG is done properly and thoroughly and there are clear lower motor neuron symptoms at the time of that EMG, then yes, those symptoms are not due to ALS if the EMG is clean . . . NOT AS YOU SAY . . . "probably not ALS at the time."

Furthermore, those with clean EMG's that later have dirty EMG's and the subsequent EMG indicates ALS . . . are those people that had upper motor neuron symptoms and no lower motor neuron symptoms during the initial EMG. As has been stated on this forum countless times, EMG's cannot detect upper motor neuron dysfunction.

It is important that we are very careful when stating things because if we aren't, then all kinds of misinformation is spread and then panic ensues.

P.S. EMG's are not subjective if done thoroughly and by a well-trained neuro. If you line-up 10 qualified neuro's to do that EMG, they will all get the same results. This idea that the EMG is subjective is too much of a blanket statement and needs to be qualified as I just did.
wright is offline  
Old 01-14-2011, 11:18 AM #11
pumpdoc's Avatar
pumpdoc pumpdoc is offline
Member
 
Join Date: 2010
City: San Marcos
State: California
Country: US
Diagnosed: 02/2010
Interest: I have been diagnosed with ALS.
Posts: 129
pumpdoc is on a distinguished road
pumpdoc pumpdoc is offline
Member
pumpdoc's Avatar
Join Date: 2010
City: San Marcos
State: California
Country: US
Diagnosed: 02/2010
Interest: I have been diagnosed with ALS.
Posts: 129
pumpdoc is on a distinguished road
Default Re: A lot of questions.

Quote:
Originally Posted by wright View Post
I'm not going to make any comments until Alexandre comes back and tells us what his neuro says. I am going to comment about something you said, Blizna:

"The thing with clean EMG=no ALS has been discussed here many times. Yes, if the EMG is done properly and thoroughly then its probably not ALS AT THE TIME. Still there are some whose EMG was clean initially and later dirty."

That is not entirely correct. To be more thorough with the explanation:

If the EMG is done properly and thoroughly and there are clear lower motor neuron symptoms at the time of that EMG, then yes, those symptoms are not due to ALS if the EMG is clean . . . NOT AS YOU SAY . . . "probably not ALS at the time."

Furthermore, those with clean EMG's that later have dirty EMG's and the subsequent EMG indicates ALS . . . are those people that had upper motor neuron symptoms and no lower motor neuron symptoms during the initial EMG. As has been stated on this forum countless times, EMG's cannot detect upper motor neuron dysfunction.

It is important that we are very careful when stating things because if we aren't, then all kinds of misinformation is spread and then panic ensues.

P.S. EMG's are not subjective if done thoroughly and by a well-trained neuro. If you line-up 10 qualified neuro's to do that EMG, they will all get the same results. This idea that the EMG is subjective is too much of a blanket statement and needs to be qualified as I just did.
What you are saying is true, but we as PALS are not doc nor do we pretend to be, but i can sure as hell get annoyed with these people that come on here looking for answers like we have the magical vision to diagnose on the web..........
pumpdoc is offline  
Old 01-14-2011, 11:51 AM #12
BarryG's Avatar
BarryG BarryG is offline
Extremely Helpful Member
 
Join Date: 2008
City: Hinton
State: Alberta
Country: CA
Diagnosed: 02/2008
Interest: Can't eat, drink or talk but still smiling!
Posts: 2,981
BarryG is on a distinguished road
BarryG BarryG is offline
Extremely Helpful Member
BarryG's Avatar
Join Date: 2008
City: Hinton
State: Alberta
Country: CA
Diagnosed: 02/2008
Interest: Can't eat, drink or talk but still smiling!
Posts: 2,981
BarryG is on a distinguished road
Default Re: A lot of questions.

Please excuse my dumb idiotic post just like I excuse all those who seem to want to have this dumb idiotic disease..

Btw, the subtitle to this thread should be "but I won't believe the answers you give me anyway"

My last time on this "Do I have ALS "
BarryG is offline  
Old 01-14-2011, 01:17 PM #13
pumpdoc's Avatar
pumpdoc pumpdoc is offline
Member
 
Join Date: 2010
City: San Marcos
State: California
Country: US
Diagnosed: 02/2010
Interest: I have been diagnosed with ALS.
Posts: 129
pumpdoc is on a distinguished road
pumpdoc pumpdoc is offline
Member
pumpdoc's Avatar
Join Date: 2010
City: San Marcos
State: California
Country: US
Diagnosed: 02/2010
Interest: I have been diagnosed with ALS.
Posts: 129
pumpdoc is on a distinguished road
Default Re: A lot of questions.

Quote:
Originally Posted by barryg View Post
please excuse my dumb idiotic post just like i excuse all those who seem to want to have this dumb idiotic disease..

Btw, the subtitle to this thread should be "but i won't believe the answers you give me anyway"

my last time on this "do i have als "
gold......................
pumpdoc is offline  
Old 01-14-2011, 03:59 PM #14
Al's Avatar
♥ Al Al is offline
Moderator
Forum Moderator
 
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 7,967
Al is on a distinguished road
♥ Al Al is offline
Moderator
Forum Moderator

Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 7,967
Al is on a distinguished road
Default Re: A lot of questions.

I'd like to say "Do not feed the trolls" and personally thought Barry's comment was funny as hell. But then if you really have ALS you get a bit warped anyway.

AL.
Al is offline  
Old 01-14-2011, 04:31 PM #15
dldred's Avatar
dldred dldred is offline
Senior Member
 
Join Date: 2009
City: Chateaugay
State: NY
Country: US
Diagnosed: 03/2009
Interest: I lost a loved one to ALS/MND.
Posts: 529
dldred is on a distinguished road
dldred dldred is offline
Senior Member
dldred's Avatar
Join Date: 2009
City: Chateaugay
State: NY
Country: US
Diagnosed: 03/2009
Interest: I lost a loved one to ALS/MND.
Posts: 529
dldred is on a distinguished road
Default Re: A lot of questions.

If you all just buy a crystal ball it would make things much easier.(sorry for the SA comment but I just couldn't help myself)

Dana
dldred is offline  
Closed Thread

Tags
abdomen, als, ankle, anxiety, atrophy, back, bed, breathing, chair, clinical, confused, cramping, cramps, diagnose, emg, fasciculations, foot, lyme, mri, muscle, muscle wasting, muscles, normal emg, pain, paralyzed, problems, progression, questions, shaking, shoulder, slow progression, symptoms, twitches, twitching, weakness, 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

Similar Threads
Thread Thread Starter Forum Replies Last Post
questions about an EMG mltg Do I Have ALS? Is This ALS? 13 01-19-2014 06:27 AM
some questions HeatherHayes Do I Have ALS? Is This ALS? 3 01-27-2013 08:29 AM
Questions slicknscoot General Discussion About ALS/MND 13 12-20-2012 12:46 AM
A few questions... Tonyjim Do I Have ALS? Is This ALS? 4 11-26-2012 11:00 AM
So many questions nomoreALS Newly Diagnosed 6 11-17-2012 01:48 PM
Questions on PBP jcmom General Discussions About PBP 13 03-04-2009 09:27 PM
Few questions to someone who might know. Daughter Joe General Discussion About ALS/MND 8 02-28-2009 01:14 PM
More Emg questions Beach61 Do I Have ALS? Is This ALS? 2 01-25-2009 03:51 PM
Still more questions Beach61 Do I Have ALS? Is This ALS? 23 01-14-2009 10:28 PM
Oh boy! Do I have questions! MarieOC Do I Have ALS? Is This ALS? 15 12-30-2008 06:46 PM


All times are GMT -5. The time now is 05:03 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