Notices

Closed Thread
 
Thread Tools Search this Thread
Old 12-10-2015, 06:24 PM #1
dutchy010 dutchy010 is offline
New Member
 
Join Date: 2015
City: rotterdam
State: zuid holland
Country: nld
Interest: Other
Posts: 17
dutchy010 is on a distinguished road
dutchy010 dutchy010 is offline
New Member
Join Date: 2015
City: rotterdam
State: zuid holland
Country: nld
Interest: Other
Posts: 17
dutchy010 is on a distinguished road
Default Scared

First of all my english is not the best in writing.
Iam 29 years old and have 3 children.
I worked as a pestcontroller and did not work always with the good precautions.

In the end of august i woke up with hyper alertness and word find problems.
And tingling in my hand palm
So i went to the doc about 3 times before he send me to a neuro.
made appointment for 4 or 6 weeks later.
I could not wait so i paid my own mri of the brain there was nothing wrong on the Mri.
About one month later i was having problems breathing and dometimes red throat(at the moment it comes and goes only at daytime)
And also my right hand felt stiff like some fingers were having problems.
At the neuro they did a eeg(nothing wrong) and emg of my right arm(ulnaris) there was a blockade.

Again only a few weeks later my right feet hurt and there was a big bulge on the sole of the foot and my toes felt jumpy it made me tired and crampy legs.
Then my left feet was like there was a straw in my toe sucking fluid up and down.

I saw another neuro they did the reflex tests and nothing was wrong also no strenght loss for what i can notice.

Last week i was checking my feet and saw a big hole at my instep.
It made me cry , i know for sure it was not there(soccer player for years).
Today my second emg of my leggs and other arm.
Al good but and this scares me the most at my; under my knee the pulse that goes to your spine i went up but didnt go out like the curve went up and not down annymore.
Somebody from the lab did the test and did not know what it means....

Somebody knows what it is?

After i came home i got fasciculations on back of my upperleg near the knee, i think anxiety.
Does it fit as ALS?
I dont know what to do anymore...
dutchy010 is offline  
Old 12-10-2015, 08:14 PM #2
Atsugi's Avatar
♥ Atsugi Atsugi is offline
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: 5,167
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
♥ 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: 5,167
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
Default Re: Scared

Dutchy, I can tell you that you don't have ALS.
Your second EMG was "all good" as you said.
Your symptoms do NOT sound like ALS at all.

No more crying. You're going to live.

Whatever you have, I don't think it is anything fatal.

I wish we could find out what you have, but we only know ALS here.
Atsugi is offline  
Old 12-11-2015, 11:25 AM #3
dutchy010 dutchy010 is offline
New Member
 
Join Date: 2015
City: rotterdam
State: zuid holland
Country: nld
Interest: Other
Posts: 17
dutchy010 is on a distinguished road
dutchy010 dutchy010 is offline
New Member
Join Date: 2015
City: rotterdam
State: zuid holland
Country: nld
Interest: Other
Posts: 17
dutchy010 is on a distinguished road
Default Re: Scared

Quote:
Originally Posted by Atsugi View Post
Dutchy, I can tell you that you don't have ALS.
Your second EMG was "all good" as you said.
Your symptoms do NOT sound like ALS at all.

No more crying. You're going to live.

Whatever you have, I don't think it is anything fatal.

I wish we could find out what you have, but we only know ALS here.
They didnt do it with needles.
When they checked under my knee the pulse that goes to my spinal was not going to sleep mode but only went up...
dutchy010 is offline  
Old 12-11-2015, 12:49 PM #4
Atsugi's Avatar
♥ Atsugi Atsugi is offline
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: 5,167
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
♥ 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: 5,167
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
Default Re: Scared

Quote:
Originally Posted by dutchy010 View Post
They didnt do it with needles.

You wrote: "Today my second emg of my legs and other arm. All good..."

So if it was not an EMG, what test was it?

You wrote: "When they checked under my knee the pulse that goes to my spinal was not going to sleep mode but only went up"

I don't know what that means.

So I withdraw my original advice from above. Now I'm simply confused by what you are writing.
Atsugi is offline  
Old 12-11-2015, 01:01 PM #5
dutchy010 dutchy010 is offline
New Member
 
Join Date: 2015
City: rotterdam
State: zuid holland
Country: nld
Interest: Other
Posts: 17
dutchy010 is on a distinguished road
dutchy010 dutchy010 is offline
New Member
Join Date: 2015
City: rotterdam
State: zuid holland
Country: nld
Interest: Other
Posts: 17
dutchy010 is on a distinguished road
Default Re: Scared

Quote:
Originally Posted by Atsugi View Post
You wrote: "Today my second emg of my legs and other arm. All good..."

So if it was not an EMG, what test was it?

You wrote: "When they checked under my knee the pulse that goes to my spinal was not going to sleep mode but only went up"

I don't know what that means.

So I withdraw my original advice from above. Now I'm simply confused by what you are writing.
Hello it was an emg without needles...
Arms and legs were good but undet my left knee she used the device and they saw that it made signal but the pulse did not lose its power like it meant to.
Ive i understood wel the motor went up but the sensory went not down..
In the netherlands they dont give us verry good information.
dutchy010 is offline  
Old 12-11-2015, 01:33 PM #6
Atsugi's Avatar
♥ Atsugi Atsugi is offline
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: 5,167
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
♥ 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: 5,167
Atsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond reputeAtsugi has a reputation beyond repute
Default Re: Scared

Perhaps someone else will come along and help out.
Atsugi is offline  
Old 12-12-2015, 09:30 AM #7
dutchy010 dutchy010 is offline
New Member
 
Join Date: 2015
City: rotterdam
State: zuid holland
Country: nld
Interest: Other
Posts: 17
dutchy010 is on a distinguished road
dutchy010 dutchy010 is offline
New Member
Join Date: 2015
City: rotterdam
State: zuid holland
Country: nld
Interest: Other
Posts: 17
dutchy010 is on a distinguished road
Default Re: Scared

Quote:
Originally Posted by Atsugi View Post
Perhaps someone else will come along and help out.
I was wrong it was only a ncv.....
Like i said in my spine the pulse did not loose its power...
dutchy010 is offline  
Old 12-12-2015, 02:23 PM #8
lgelb's Avatar
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 7,086
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 7,086
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Scared

Abnormalities in the NCS point away from ALS, Duchy, which is good. It's hard to make out the test results, but you need to stay in contact with the office that made the tests and not give up until they have diagnosed you, or referred you somewhere that can. I know there are good university medical centers in the Netherlands; Ultrecht appears to be one of the best.
lgelb is offline  
Old 12-12-2015, 03:10 PM #9
dutchy010 dutchy010 is offline
New Member
 
Join Date: 2015
City: rotterdam
State: zuid holland
Country: nld
Interest: Other
Posts: 17
dutchy010 is on a distinguished road
dutchy010 dutchy010 is offline
New Member
Join Date: 2015
City: rotterdam
State: zuid holland
Country: nld
Interest: Other
Posts: 17
dutchy010 is on a distinguished road
Default Re: Scared

Quote:
Originally Posted by lgelb View Post
Abnormalities in the NCS point away from ALS, Duchy, which is good. It's hard to make out the test results, but you need to stay in contact with the office that made the tests and not give up until they have diagnosed you, or referred you somewhere that can. I know there are good university medical centers in the Netherlands; Ultrecht appears to be one of the best.
Thank you for the answer and after my holliday(leaving the 14 to florida)
I"ll go to utrecht .to be honest i tried to call them yesterday.
She saw this almost never that the power would not be reduce.
But at the other hand it was only in one of my knees and no other parts of my body, i already had an emg with the outcome of a ulnaris problem and at the last emg she saw that the other side was also a little abnormal.
dutchy010 is offline  
Old 12-12-2015, 03:19 PM #10
dutchy010 dutchy010 is offline
New Member
 
Join Date: 2015
City: rotterdam
State: zuid holland
Country: nld
Interest: Other
Posts: 17
dutchy010 is on a distinguished road
dutchy010 dutchy010 is offline
New Member
Join Date: 2015
City: rotterdam
State: zuid holland
Country: nld
Interest: Other
Posts: 17
dutchy010 is on a distinguished road
Default Re: Scared

Few more question: i've got a big hole on my foot, is it possible you first get atrophy before strength loss? Also my knee looks a little thinner.
And after the emg test i became having fasculations is that because of anxiety or maybe because of the electric pulses? Only in the evening and ones front of the knee and the back of my knee.
When i make scissors with my fingers(index and middle finger) it almost feels like i got no strength.
But i can jump, walk on my toes o,pen bottles, hold 2 books with my thumb and index finger.
dutchy010 is offline  
Old 12-13-2015, 05:16 AM #11
affected's Avatar
affected affected is offline
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 11,461
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 11,461
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Scared

I think that as I'm the third senior member to answer your thread you can stop coming here and just work with your doctors. You do not have ALS symptoms and I'm so happy for you!

I don't think you need to keep asking questions, if you had ALS it would be obvious in your first posts. The great news is that whatever is going on will be able to be fixed if you work with doctors rather than the internet. Staying away from here will be the best thing you can do for your health now.
affected is offline  
Old 12-13-2015, 06:15 AM #12
dutchy010 dutchy010 is offline
New Member
 
Join Date: 2015
City: rotterdam
State: zuid holland
Country: nld
Interest: Other
Posts: 17
dutchy010 is on a distinguished road
dutchy010 dutchy010 is offline
New Member
Join Date: 2015
City: rotterdam
State: zuid holland
Country: nld
Interest: Other
Posts: 17
dutchy010 is on a distinguished road
Default Re: Scared

Hello,

First if all thanks for replying.
And i only hope its true! I dont got ALS.
My grandfather had mystenia gravis and because they did not know they lifted his eyes 3 times.

Thats why iam on my guard as my symptoms proceed.
Notice my pinky toe goes down in reflex and comes up later.
Hopefully its all axiety... because i got 3 children who i want to see them grow up....
And if i really diagnosed with no ALS... i want to do something back for the people with this horrible disease.
dutchy010 is offline  
Old 12-22-2015, 12:59 PM #13
dutchy010 dutchy010 is offline
New Member
 
Join Date: 2015
City: rotterdam
State: zuid holland
Country: nld
Interest: Other
Posts: 17
dutchy010 is on a distinguished road
dutchy010 dutchy010 is offline
New Member
Join Date: 2015
City: rotterdam
State: zuid holland
Country: nld
Interest: Other
Posts: 17
dutchy010 is on a distinguished road
Default Re: Scared

Hello a little update:

Cvs shows absence of h reflex on de back of my right knee.
My neuro told me this could be nothing.
Ive got on regular times fasculations around my elbow pit and above my knees.
Strength loss :not that i can notice only that my feet get tired after walking.
What came back as a symptom is my breathing problems and the feeling i speak diffrent.
dutchy010 is offline  
Old 12-22-2015, 01:27 PM #14
affected's Avatar
affected affected is offline
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 11,461
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 11,461
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Scared

Great news, thank you for updating us. Still no ALS symptoms and it doesn't sound like your neurologist is concerned.

all the best
affected is offline  
Old 12-22-2015, 01:43 PM #15
dutchy010 dutchy010 is offline
New Member
 
Join Date: 2015
City: rotterdam
State: zuid holland
Country: nld
Interest: Other
Posts: 17
dutchy010 is on a distinguished road
dutchy010 dutchy010 is offline
New Member
Join Date: 2015
City: rotterdam
State: zuid holland
Country: nld
Interest: Other
Posts: 17
dutchy010 is on a distinguished road
Default Re: Scared

Thanx for the reply.
To be honest my neuro is verry lacking... she did not know what my first symptoms were, she called me and could not open de cvs and when i cane she did not take a look at my mri.
Indeed i do not have the feeling i'm less strong.
But i do feel my feet are tired. Maybe because of my shoes.

For the cvs with a h reflex absent its not a MND thing right.
I could not find it on the internet.
My daughter had vulgaris/contagiosa thats when my breath problems started and ive got it also now.
dutchy010 is offline  
Closed Thread

Tags
anxiety, arm, back, brain, breathing, children, cry, emg, fasciculations, fingers, foot, ice, mri, problems, reflex, scared, tests, 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
Still scared, need some help please! Mjmx94 Do I Have ALS? Is This ALS? 4 06-23-2013 10:39 AM
Very very scared! Mjmx94 Do I Have ALS? Is This ALS? 17 06-13-2013 03:49 PM
Scared I have BFS glupavomomiche Do I Have ALS? Is This ALS? 11 05-17-2012 08:48 AM
Scared ! Amy Perdomo General Discussion About ALS/MND 5 05-09-2012 08:20 PM
16 yr old scared of als Johntorres12 Do I Have ALS? Is This ALS? 11 04-30-2012 10:32 PM
Could this be ALS, quite scared hopesprings Do I Have ALS? Is This ALS? 35 04-27-2012 05:49 PM
Scared hbto3k Do I Have ALS? Is This ALS? 11 03-08-2012 07:22 PM
Scared..... CoachMeg Current Caregivers (CALS) 27 03-05-2012 09:09 PM
Very scared Hhoff Do I Have ALS? Is This ALS? 1 11-27-2011 11:20 PM
Scared again! sjob Do I Have ALS? Is This ALS? 8 08-04-2011 03:21 PM


All times are GMT -5. The time now is 07:27 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