Old 11-28-2016, 04:01 AM #1 (permalink)
Banned
 
Join Date: 2016
City: Glasgow
State: Glasgow
Country: UK
Interest: Other
Posts: 10
L4CA is on a distinguished road
L4CA L4CA is offline
Banned
Join Date: 2016
City: Glasgow
State: Glasgow
Country: UK
Interest: Other
Posts: 10
L4CA is on a distinguished road
Default Could this be Als

Hi I am wondering if someone could help?

I am a 36 year old female. I had my third baby 9 weeks ago.

During pregnancy I started noticing my left eye felt strange. It then progressed to the muscles on left side of my face feeling tight. Everything moves normally.

Due to having headaches aswell I had a brain MRI two weeks ago which was clear. Seen a neurologist which he said his examination was normal.

I have been struggling with constant threat clearing and feeling of post nasal drip. I am waking up out of sleep several times per night coughing as though my throat is not swallowing? I've also noticed now that I feel I can't follow through with a sneeze. I get the feeling that I'm going to sneeze and then nothing happens. Could this be a problem with my throats muscles? I have no issues eating and drinking.

My left calf seems slightly thinner than my right and on the odd ocassion I've felt my left foot trips on uneven surface. I'm also suffering from Brian fog.

I'm now worrying this could be ALS? I have another neuro app in 3 week and I will discuss it then.

Can anyone give me their thoughts please?

Thanks
L4CA is offline  
Old 11-28-2016, 04:19 AM #2 (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: 8,556
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: 8,556
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: Could this be Als

Congratulations on your new baby

There is a post at the top of this forum section READ BEFORE POSTING. It would really help you to do that.

You describe lots of feelings. ALS is a disease where the motor neurones in the brain begin to die. They make your muscles work. They are not sensory nerves.

So you don't feel any different at all, you simply begin to fail to be able to do things.

In your case, you would begin to fail to swallow or to speak. But you would feel perfectly normal.

My husband died from bulbar onset ALS, and that's exactly how it was, he failed, but he was always stunned at how perfectly normal he felt.

Try to enjoy your new baby, you don't have ALS symptoms. All the best.
affected is offline  
Old 11-28-2016, 08:52 AM #3 (permalink)
Banned
 
Join Date: 2016
City: Glasgow
State: Glasgow
Country: UK
Interest: Other
Posts: 10
L4CA is on a distinguished road
L4CA L4CA is offline
Banned
Join Date: 2016
City: Glasgow
State: Glasgow
Country: UK
Interest: Other
Posts: 10
L4CA is on a distinguished road
Default Re: Could this be Als

Thanks you.

I am also concerned as I have been waking up out of a sleep ice cold and trembling and I am concerned that I am stopping breathing? This happens when I am sleepin on my side and is different from obstructive sleep apnea as I also get that and have done for years if I sleep on my back.

I truly am terrified.
L4CA is offline  
Old 11-28-2016, 09:20 AM #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: 3,949
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 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: 3,949
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 of
Default Re: Could this be Als

Something tells me your OSA has not been adequately treated -- it would not be surprising if the pregnancy and disturbed sleep that newborns entail has triggered/worsened more issues, e.g. sinus congestion and perhaps even perceived clumsiness secondary to lack of refreshing sleep. From what you describe it less likely that your problems are neurological and more likely that seeing a sleep specialist or ENT would be helpful.

Enjoy your new arrival.

Best,
Laurie
lgelb is offline  
Old 11-28-2016, 09:49 AM #5 (permalink)
Banned
 
Join Date: 2016
City: Glasgow
State: Glasgow
Country: UK
Interest: Other
Posts: 10
L4CA is on a distinguished road
L4CA L4CA is offline
Banned
Join Date: 2016
City: Glasgow
State: Glasgow
Country: UK
Interest: Other
Posts: 10
L4CA is on a distinguished road
Default Re: Could this be Als

Hi Laurie

Thanks. I have never had the sleep
Apnea treated. I also do suffer from very bad sinus congestion and have done for years.
My concern was more why it's happening on my side. Normally it only happens on my back. This has all just started since I delivered my baby 9 weeks ago. Although I did have the eye issues in pregnancy which I still have.

I will speak to the neurologist when I go back in 3 weeks as I never mentioned the sleep issues as I just put it down to being related to being stressed and interrupted sleep.

Thanks xxx
L4CA is offline  
Old 11-28-2016, 12:45 PM #6 (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: 8,556
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: 8,556
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: Could this be Als

Go now and see your regular doctor and discuss this. A new mother needs to look after herself and her baby.

You don't have ALS, no chance, but what is happening can be treated and you can get help right now - from doctors not the internet.

I truly hope you can get help and start enjoying your baby. You never get this time back with your child, so don't waste it here.
affected is offline  
Old 12-15-2016, 05:46 AM #7 (permalink)
Banned
 
Join Date: 2016
City: Glasgow
State: Glasgow
Country: UK
Interest: Other
Posts: 10
L4CA is on a distinguished road
L4CA L4CA is offline
Banned
Join Date: 2016
City: Glasgow
State: Glasgow
Country: UK
Interest: Other
Posts: 10
L4CA is on a distinguished road
Default Re: Could this be Als

Hi there

My previous post was lost when trying to merge. I forgot I need to write on same thread sorry about that.

I'm at a total loss. I have all these symptoms that are really frightening me.

Inside my mouth I am biting my tongue and cheeks every night
Tongue sits more to the right in my mouth
Swallowing all the time and feels difficult
Sometimes certain words come out wrong but when I say them again it's fine
Left foot and ankle pain and looks thinner than right

I have seen the neurologist 3 times recently and he has conducted full exams each time. Looking in my mouth getting me to blow out my cheeks, whistle etc. Checked reflexes and babinski. Jaw and mouth reflexes and a lot of other things.

Each time he has said that the exams are normal. He said that he cannot find anything neurologically wrong. He is a very experienced neuro and has treated many ALS patients.

I finally pushed him for an emg and he has agreed because I keep going back but has said to me it will be normal. I just don't believe that because I have all these symptoms. He has said that it is anxiety causing all of this. What are the chances that he is wrong?

Thanks x
L4CA is offline  
Old 12-15-2016, 07:28 AM #8 (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: 4,903
Nikki J has much to be proud ofNikki J has much to be proud ofNikki J has much to be proud ofNikki J has much to be proud ofNikki J has much to be proud ofNikki J has much to be proud ofNikki J has much to be proud ofNikki J has much to be proud of
♥ 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: 4,903
Nikki J has much to be proud ofNikki J has much to be proud ofNikki J has much to be proud ofNikki J has much to be proud ofNikki J has much to be proud ofNikki J has much to be proud ofNikki J has much to be proud ofNikki J has much to be proud of
Default Re: Could this be Als

Your symptoms do not sound like ALS and you have had multiple normal exams. The doctor who has seen you has given his opinion. The chances of a highly experienced doctor not recognizing ALS when he has seen it many times would be extremely low. Please, we have given opinions. There is nothing more to say until you have EMG results to share
Nikki J is offline  
Old 12-15-2016, 08:16 AM #9 (permalink)
WendyWooG's Avatar
Member
 
Join Date: 2016
City: Stevenage
State: Hertfordshire
Country: Uk
Diagnosed: 07/2016
Interest: I have been diagnosed with ALS.
Posts: 295
WendyWooG has a spectacular aura aboutWendyWooG has a spectacular aura aboutWendyWooG has a spectacular aura about
WendyWooG WendyWooG is online now
Member
WendyWooG's Avatar
Join Date: 2016
City: Stevenage
State: Hertfordshire
Country: Uk
Diagnosed: 07/2016
Interest: I have been diagnosed with ALS.
Posts: 295
WendyWooG has a spectacular aura aboutWendyWooG has a spectacular aura aboutWendyWooG has a spectacular aura about
Default Re: Could this be Als

Hi

I cannot imagine how difficult this is for you dealing with these problems with a young family. I can say what you are describing doesn't come across as ALS, as your neurologist feels that the problem you have is not neurological you might be best going back to your GP and getting them to widen the area of investigation. Go through your symptoms with them and ask what else it could indicate it's worth covering all options.

I wish you luck and I hope your doctor can find a solution for you soon

Wendy x
WendyWooG is online now  
Old 12-18-2016, 12:45 PM #10 (permalink)
Banned
 
Join Date: 2016
City: Glasgow
State: Glasgow
Country: UK
Interest: Other
Posts: 10
L4CA is on a distinguished road
L4CA L4CA is offline
Banned
Join Date: 2016
City: Glasgow
State: Glasgow
Country: UK
Interest: Other
Posts: 10
L4CA is on a distinguished road
Default Re: Could this be Als

Hi

Thanks Nikki and Wendy.

My emg is scheduled for 5th Jan. To pick up bulbar where does the emg need to be done?

I'm really struggling with my tongue at the moment. I'm waking up biting it usually on the right. When I feel the right side of my tongue I can easily turn it up etc and less so on the left. It's leading me to believe it is weak at that side and that's why it keeps going to the right teeth in. Y mouth. Yes the neurologist observed it in my mouth and had me stick it out, tent it etc and said it's normal.

My mouth is very dry because I was so worried I am barely eating and drinking. So sometimes when I am speaking I am sticking at words and I'm not sure if it's because my mouth is dry...or from ALS.

Then the left foot. I had pain in the heels and although I can do walking on toes, heels, balancing on one foot etc it will hurt afterwards. This is the foot that is thinner, ankle
And calf. The neurologist said it's just normal limits.

I cannot see how this can't be ALS. I've got myself terrified now. I've read so many stories on here of people saying they had these symptoms and diagnosed.

I'm sorry to bother you all as I know you are dealing with it yourselves personally.
L4CA is offline  
Old 12-18-2016, 12:59 PM #11 (permalink)
Member
 
Join Date: 2014
City: Round Hill
State: VA
Country: US
Diagnosed: 02/2014
Interest: I lost a loved one to ALS/MND.
Posts: 239
codyclan has a spectacular aura aboutcodyclan has a spectacular aura about
codyclan codyclan is online now
Member
Join Date: 2014
City: Round Hill
State: VA
Country: US
Diagnosed: 02/2014
Interest: I lost a loved one to ALS/MND.
Posts: 239
codyclan has a spectacular aura aboutcodyclan has a spectacular aura about
Default Re: Could this be Als

My husband has bulbar onset ALS. None of what you listed were his symptoms. None of them. No pain after heel walking or balancing. When the neurologist looked at his tongue, he did not say, at any point in time, that it was normal. You say you read the stories with similar symptoms and then they are later diagnosed but I would like to see those posts, because, truly, in my experience, this is not the case. You do not describe ALS symptoms, really and truly. Your neurologist is not concerned.

They will know where to do the EMG--this is their profession, don't second guess them. You say you can't see how this can be anything other than ALS, but we really CAN"T see how it could be ALS. Let the doc diagnosis you. If he comes back with normal EMG report, then ask where you go from here? Don't hem them into ALS as it may limit their diagnositic perspective.

In the meantime, being on this forum is just feuling your fears. You really need to promise yourself that you will log off and not post until after the EMG. Enjoy the holidays and your family, worrying will not change a thing, but worrying will impact your ability to enjoy your life in the moment.

Best wishes.
Tracy
codyclan is online now  
Old 01-11-2017, 11:10 AM #12 (permalink)
Banned
 
Join Date: 2016
City: Glasgow
State: Glasgow
Country: UK
Interest: Other
Posts: 10
L4CA is on a distinguished road
L4CA L4CA is offline
Banned
Join Date: 2016
City: Glasgow
State: Glasgow
Country: UK
Interest: Other
Posts: 10
L4CA is on a distinguished road
Default Re: Could this be Als

Hi all

Thanks again for all the support.

I have now had my emg and just wanted to update. The ALS specialist told me on the day of the emg there was definitely no als or mg and when he had the final report he would call me once he had completed the final calcs etc. So he called last night to say the emg is 'entirely normal' and there are no nerve of neuromuscular diseases going on.

The emg was done on both legs, hands and arms. My left leg has perceived weakness and atrophy with pain. I am still having issues with biting my tongue and at times worrying I am slurring bits of my speech. All of the other issues have subsided.

The neuro had said my nervous system is over stimulated with stress and post natal hormones and this is the reason for all my symptoms.

I have had a brain MRI all clear
4 neuro exams by a 2 specialists including tongue examination of all cranial nerves including tongue and every exam. This has been going on since October.
Clean emg

I just can't stop worrying I have bulbar onset now since the emg was clear.

The specialist performing the emg stated he unfortunately diagnoses ALS every week due to this being the specialist ALS centre for the whole of the country and said I do have ALS.

Yet I keep biting my tongue mainly in sleep then it rubs against my teeth all day as it's sore and swollen , speech sounds different slurry to me but everyone around me says it's not and feels like it sits more to the right in my mouth.

My rational mind is telling me 2 ALS specialists, multiple. Normal neuro exams and a clean emg can't be wrong....and yet there is a but...

Thanks so much.
L4CA is offline  
Old 01-11-2017, 11:48 AM #13 (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: 710
ShiftKicker is a glorious beacon of lightShiftKicker is a glorious beacon of lightShiftKicker is a glorious beacon of lightShiftKicker is a glorious beacon of lightShiftKicker is a glorious beacon of light
♥ 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: 710
ShiftKicker is a glorious beacon of lightShiftKicker is a glorious beacon of lightShiftKicker is a glorious beacon of lightShiftKicker is a glorious beacon of lightShiftKicker is a glorious beacon of light
Default Re: Could this be Als

I am really happy to hear you don't have ALS (as confirmed by multiple medical specialists). Keep following up with your doctors to track down the source of your symptoms, but know that you don't belong here. That's a good thing!

Best wishes
ShiftKicker is offline  
Old 01-11-2017, 12:09 PM #14 (permalink)
Member
 
Join Date: 2014
City: Round Hill
State: VA
Country: US
Diagnosed: 02/2014
Interest: I lost a loved one to ALS/MND.
Posts: 239
codyclan has a spectacular aura aboutcodyclan has a spectacular aura about
codyclan codyclan is online now
Member
Join Date: 2014
City: Round Hill
State: VA
Country: US
Diagnosed: 02/2014
Interest: I lost a loved one to ALS/MND.
Posts: 239
codyclan has a spectacular aura aboutcodyclan has a spectacular aura about
Default Re: Could this be Als

There is no but. You are clear of ALS. There is nothing else we can say.
Congratualtions and best wishes.
Tracy
codyclan is online now  
Thanks from
starente15 (01-11-2017)
Old 01-11-2017, 03:36 PM #15 (permalink)
DaChief's Avatar
New Member
 
Join Date: 2016
City: Loudon
State: Tennessee
Country: US
Diagnosed: 12/2016
Interest: I have been diagnosed with ALS.
Posts: 70
DaChief is on a distinguished road
DaChief DaChief is online now
New Member
DaChief's Avatar
Join Date: 2016
City: Loudon
State: Tennessee
Country: US
Diagnosed: 12/2016
Interest: I have been diagnosed with ALS.
Posts: 70
DaChief is on a distinguished road
Default Re: Could this be Als

Go enjoy your life and family!
DaChief is online now  
Closed Thread

Tags
als, als?, brain, coughing, eating, eye, female, foot, headaches, mri, muscles, neurologist, night, problem, sleep, swallowing


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


All times are GMT -5. The time now is 09:16 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