Advice please

Bestfriends14

Very helpful member
Forum Supporter
Joined
May 7, 2017
Messages
1,098
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
As Nikki said, no one thinks that you have ALS (you're the only one who thinks that you do). It is truly best for to you move on and continue to work with your docs. Continuing to focus on a disease that you so obviously do not have only impedes your ability to start to get proper advice for whatever it is you do have. Again, your answers are not here and there is nothing more we can say, so please stop adding to the list of your non-ALS symptoms.

Take good care, stay safe, and good luck.
 

Newy

Member
Joined
Feb 2, 2021
Messages
16
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
Apologies and thank you.

Please all take care and i have made a donation.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
9,633
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I agree that treating the thrush, which can only magnify everything else, is key to your nutrition and wellbeing. Any kind of ongoing pain affects your sleep and when you are tired you do tend to focus on your breathing and struggle with routine activity.
 

Newy

Member
Joined
Feb 2, 2021
Messages
16
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
I am sorry to pester this forum but appreciate all the advice
 

Newy

Member
Joined
Feb 2, 2021
Messages
16
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
Hi -
Apologies to be back but I’ve had some further symptoms and I just want to ask.

My mouth and tongue issue of great concern.

symptoms:

Pain near front of tongue and left side.
Uncomfortable under my chin, like I’ve got swellings.
Thrush now clear.
Gag reflex happens when over exert ie too much walking or when I go on the slide with my daughter.
My tongue feels like it’s straining constantly.
My voice is losing power.
It’s affecting my ears and they popping.

anything relating to Bulbar as I saw this on net and worries me.
 

Attachments

  • 9E587695-25F6-4515-AE94-6C893E553FC7.jpeg
    9E587695-25F6-4515-AE94-6C893E553FC7.jpeg
    194.8 KB · Views: 41

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
3,731
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hi Newy-

This forum is good for some initial general advice, but it can't be used to help folk diagnose themselves with anything. Keep working with your doctors to track down the cause of your issues, but it's clear this forum can't help you or provide you much more in the way of what you are looking for.

It's clear you are focused on ALS as the cause of your symptoms, despite what the people here have already told you. This may be preventing you from hearing what the doctor is telling you and also standing in the way of wellness. It's important to address that fear as well while you search for answers. My hope is that you can find someone to help you with that- there are some great resources online if you are reluctant to address it with your doc.

Please reread the Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms post to reassure yourself and to remind about what this forum is here for. The section titled "Finally" provides some guidance.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,944
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
Newy, your thread has gone on for two pages now.

On Feb 12th you posted that you had an EMG.

It would very helpful if you would post the summary/conclusion
at the bottom of the report.

You were able to post an attachment of something you found on
the internet.

If you internet searched Anarthia you would find there are numerous
causes of it besides ALS. I did.

Finally, on Feb 12th you posted....

"I’ve had an EMG and they tested everywhere including under my chin
and also checked all my reflexes and said everything was as it should be."

It's pretty clear this Forum is not helping you (anxiety) or can help you
further.
 

Newy

Member
Joined
Feb 2, 2021
Messages
16
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
Thank you both.
Apologies I will seek support as advised.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
9,633
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Could be a secondary infection, allergies and/or sinus. Still not ALS. Try a nasal steroid and stay in touch with your doc.
 

Newy

Member
Joined
Feb 2, 2021
Messages
16
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
Thank you - I’ve said no more replies so I take this time to wish you all the very best!
 

Newy

Member
Joined
Feb 2, 2021
Messages
16
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
Hi
just an update for anyone following this thread.

I had my face to face appt with Neuro yesterday - they tested everything and had me walking etc and cleared me of anything neurological going on.

with regards to my mouth I’m having loads of problems with my tongue and under my chin still as explained - they have suggested tests for a couple of syndromes one being an Sjorgens (I think this is how you spell it)

With regard to twitches and internal tremors they are doing Endocrine gland tests to see if sending adrenaline rush throughout body.

hope this helps others!

thanks so much for advice and support.
The anxiety and BFS forums suggested really helped.
 
Top