Old 10-06-2015, 10:39 PM #1 (permalink)
New Member
 
Join Date: 2015
City: Brisbane
State: QLD
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
Thelights is on a distinguished road
Thelights Thelights is offline
New Member
Join Date: 2015
City: Brisbane
State: QLD
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
Thelights is on a distinguished road
Default Other thread closed

Hello again all.

3 months ago i had my appointment with a neuro that specialises in e.m.g in a hospital of brisbane city.

The moment he did a brief examination of me and asked my history he immediatley told me he doesn't thinks its als.
He still went ahead with more blood tests and reflex tests e.t.c babinski and other reflex tests.

All came normal .
I mentioned specifically that i was having issues with my feet and walking felt like a "near limp"

A doctor and physio checked me over and the physio was the only one that noticed a slight bit of weakness but not enough to call it profund and when i did a push up for her i showed her that it triggered fasciculations.

Im not sure if that had been taken into consideration in the end evaluation or not .

I finally had the ncv to which the neuro told me i have "super nerves" and the e.m.g came up clear .
He told me that my issue was anxiety and that i should follow this up with my psychologist . I showed him my hypothenar on my right hand and the fact that it always twitches when clenching a lose fist.

He dictated the report to the telephone and when i asked him to explain my issues he pretty much just said anxiety and i felt like he wanted me out of the office.

I went home with some relief but at the same time some skepticism.
A few weeks later the report arrived and i looked over it . The report mentioned that the rhunatologist had sent me to the hospital with a als diagnosis. The neuro explained that there was nothing organic wrong with me (heres the part that pisses me off) he said i RARELY have twitching in my hypothenar .

At this time inof course still have cramp pains , shakiness , tiredness and the twitching persists . The twtiching seems to have settled more in my right leg , which is the limb that is causing me the most issues .

Mentally i am currently feeling better , but I am now more annoyed as the health issues persist. As i have been given the clear by the neuro i now feel as though people expect me to (have a cup of concrete and harden the f*ck up) this frustrates me as i would more than love to jump back into my old hobbies .

During this time i have tried accupressure to help me which yeilded no result. It has however freaked me out more because the lady that was doing it needs to touch my feet and my big toe has flicked up . I have gone to a new doctor and asked him to reproduce the reflex test and my feet netiher go up or down . However im having further difficulty and co-ordination problems progressivley. If i curl my toes down i begin to cramp on the bottoms of my feet .

After seeing the new doctor he has told me I do have something organic going on and that he ( im back here again) thinks its my thyroid . - i have antibodies against my thyroid and its clinically subacute via ultrasound- he told me that my throid will die soon but my thyroids been like this for some time .

When i asked him about my big toes flicking up and if there can be anomalies he said yes ..

To summarise my issues

Twtiching all over but has been more consistent in right leg past week

Myclonus -leg jerks , arm and head jerks

Cramps all over hands back under shoulder blades feet

Shakiness

Tiredness

Weakness

Uncoordination

Potential babinski


I have scheduled an appointment with another neuro for december as a second opinion. In the mean time doc will send me to endocrinologist.

This clearly doesnt sound like als as i have had a clean e.m.g
What about pls . I should also mention that when i had my thyroid checked i had the ultrasound person take a look at my left shoulder that has bursitis and my feet .. apparantley my feet are borderline plantar fascitis .. does mnd have muscle inflammation as a symptom . Thr neuro said that thyroid can have a direct effect on neurological functions _ i cant see that being the caralyst of a babinski response_
What other things/disease relate to a present babinski sign .

Thank you once again for taking the time to read and answer my speel.
Thelights is offline  
Old 10-06-2015, 10:50 PM #2 (permalink)
New Member
 
Join Date: 2015
City: Brisbane
State: QLD
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
Thelights is on a distinguished road
Thelights Thelights is offline
New Member
Join Date: 2015
City: Brisbane
State: QLD
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
Thelights is on a distinguished road
Default Re: Other thread closed

Also i only have to bump my leg slightley or get touched by someone and i jump a mile. 4 months ago i was wearing my leather jacket and the inside lining touched my rib whilst driving and that made me jump a mile.
Thelights is offline  
Old 10-06-2015, 11:01 PM #3 (permalink)
Green Queen's Avatar
Very Helpful Member
 
Join Date: 2015
City: By the beach
State: Western Australia
Country: AUS
Diagnosed: 4/2016
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 1,290
Green Queen is on a very distinguished roadGreen Queen is on a very distinguished road
Green Queen Green Queen is offline
Very Helpful Member
Green Queen's Avatar
Join Date: 2015
City: By the beach
State: Western Australia
Country: AUS
Diagnosed: 4/2016
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 1,290
Green Queen is on a very distinguished roadGreen Queen is on a very distinguished road
Default Re: Other thread closed

Gday.
Please don't go looking for PLS. ALS is a horrible terminal disease, but PLS is no picnic either.
I have had weakness since onset. No pushups could be done. From day one. Plus no fasiculations. Not a symptom of PLS at all.
Babinski is a symptom of neurological problems. It happens all the time, not intermittently, that's good news for you.
Please don't wish this on yourself. Let them do their job, and trust them.
If you get your anxiety under control I'm sure most of your symptoms will subside.
All the best to you and your doctor.
Janelle x
Green Queen is offline  
Old 10-06-2015, 11:29 PM #4 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,971
lgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud of
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,971
lgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud oflgelb has much to be proud of
Default Re: Other thread closed

Lights, everything you have highlighted could be explained by endocrine issues, and your body's hypervigilance as a response to those (endocrine imbalances often amount to the equivalent of driving a car by alternately gunning the engine and slamming on the brakes).

The Babinski is a red herring.

I'm glad you're seeing an endo and I suspect there is a regimen there that can provide you some relief. But you're in the wrong place here, so rejoice, get a massage, do a hot tub, go for a nature walk, and appreciate that you can still do all those things. Most MND sufferers here cannot.

Best,
Laurie
lgelb is offline  
Old 10-07-2015, 04:08 AM #5 (permalink)
affected's Avatar
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: 8,585
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: 8,585
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: Other thread closed

honestly you've been seen by the experts, we went through Brisbane and I can highly recommend their expertise.

They know ALS (or MND) as we call it the moment they start looking you over.

You don't describe ALS and you certainly don't describe PLS. Maybe you have an endocrine issue, the neurologist would not pick this up but would know whether your 'symptoms' were because of dying nerves.

Anxiety is a real health issue, it's not something said to just flick you off.

BTW I've always been led to believe just a teaspoon of concrete a day is enough over time

Babinski is a reflex and it does not come and go. Having one reaction once does not mean you have developed this especially when a doctor could not get it to recur.

You do need to follow up with your doctors but you do need to stay away from here as fixating on a motor neurone disease is not helping any of your health issues at all.

All the best, I'm sure they will find what is happening and you will be able to treat it. That's cause for celebration rather than trying to force what you are experiencing into this rare fatal disease.
affected is offline  
Old 10-09-2015, 06:20 PM #6 (permalink)
New Member
 
Join Date: 2015
City: Brisbane
State: QLD
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
Thelights is on a distinguished road
Thelights Thelights is offline
New Member
Join Date: 2015
City: Brisbane
State: QLD
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
Thelights is on a distinguished road
Default Re: Other thread closed

Thanks for the replies ladies. Im pretty confused atm as im literally having walking issues. I can stand on tip toes walk on heels e.t.c but when i walk normally my legs arent 100% my heel has hit the ground now and then and my legs dont feel stable on uneaven surface. Unless i concentrate i worry that i might fall over.

All i can do now is troop on.

Ill post back after i get my second opinion /late december.

Thank you once again.
Thelights is offline  
Old 10-15-2015, 11:56 PM #7 (permalink)
New Member
 
Join Date: 2015
City: Brisbane
State: QLD
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
Thelights is on a distinguished road
Thelights Thelights is offline
New Member
Join Date: 2015
City: Brisbane
State: QLD
Country: AUS
Interest: I am interested in learning about ALS/MND.
Posts: 41
Thelights is on a distinguished road
Default Re: Other thread closed

What the hell is going on the fasciculations as mentioned are more frequent in my legs particularly right leg . They have also changed they are not the occasional big thumpers as before but lots of mini one around the surrounding area under sole of my foot .some of which i cannot feel ans its continous . Im still having big thumpers and as mentioned before i havent had a single day where i havntlet felt on form since feb . its still gradually getting worse .

How was it that the e.m.g didnt pick up any fasciculations during the appointment?

Im getting disheartened once again and im getting no solid answers.
Thelights is offline  
Old 10-16-2015, 12:07 AM #8 (permalink)
affected's Avatar
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: 8,585
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: 8,585
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: Other thread closed

Truly mate fasciculations mean NOTHING.

They are very often stress induced.

If they are not caused by dying nerves they probably won't be seen on the EMG.

Please, go back and keep asking your doctors, work with them, tell them how anxious you are.

All the best, this is not the place for you.
affected is offline  
Old 10-16-2015, 02:51 AM #9 (permalink)
Green Queen's Avatar
Very Helpful Member
 
Join Date: 2015
City: By the beach
State: Western Australia
Country: AUS
Diagnosed: 4/2016
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 1,290
Green Queen is on a very distinguished roadGreen Queen is on a very distinguished road
Green Queen Green Queen is offline
Very Helpful Member
Green Queen's Avatar
Join Date: 2015
City: By the beach
State: Western Australia
Country: AUS
Diagnosed: 4/2016
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 1,290
Green Queen is on a very distinguished roadGreen Queen is on a very distinguished road
Default Re: Other thread closed

It may be that they aren't fasciculations. Could be just twitches. They are different.
Good luck.
Janelle
Green Queen is offline  
Closed Thread

Tags
als, anxiety, arm, back, diagnosis, fasciculations, health, love, mnd, muscle, pls, problems, reflex, second opinion, shoulder, symptom, tests, tiredness, twitches, twitching, ultrasound, wanted, 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
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Sorry to bother again, my first thread was closed Arska Do I Have ALS? Is This ALS? 10 10-06-2015 07:36 AM
Previous Thread Closed, quick weakness question.. worried2014 Do I Have ALS? Is This ALS? 10 04-08-2015 07:39 AM
My previous thread is closed. 5 Questions twitchy23 Do I Have ALS? Is This ALS? 10 02-23-2015 03:49 PM
Closed threads Forester General Discussion About PEG's 7 02-04-2014 12:46 PM
Closed Threads (Wish I'd known..) Plumeria84 Current Caregivers (CALS) 31 06-28-2012 03:32 PM
CLOSED Threads- that are still active?! kmendsley Suggestions, Problems or Bugs 5 02-29-2012 09:11 AM
closed mouth and neck supports irismarie People With ALS - "PALS" 31 10-15-2010 04:39 PM
is this ALS thread jamorel General Discussion About ALS/MND 17 05-08-2010 12:36 PM


All times are GMT -5. The time now is 09:45 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