Possible Bulbar onset?

Status
Not open for further replies.

Unsettled5

Member
Joined
May 17, 2013
Messages
17
Reason
Learn about ALS
Diagnosis
00/0000
Country
AU
State
NS
City
Sydney
Hi Pals,
I hope I’m not breaking any of the rules, but I was looking for some information, I sincerely appreciate any information you can provide.

I recently went to my general dr, because the left side of my tongue has been twitching and becoming progressively weaker.

She did some tests, suggested an MRI and referred me to a neurologist, wrote on the referral possible MND. I’m yet to see the neurologist due to the wait list (another 6 weeks away)

Blood tests came back clear (b12 tested too)
MRI came back clear.
The test she performed were, asking me to push my tongue into my cheek on both sides. I was able to push my cheeks out but barely able to hold it there.
Then asked me to protrude my tongue and move it from side to side, which was quite slow and felt weak.

The weird thing is, there isn’t any atrophy, but the sides of my tongue are quite weak, when pushing my tongue out of my mouth, they just fold towards the centre of my tongue.

I have felt the twitching down my throat and it seems to have made my swallowing slower. I feel the twitches in my tongue, but am no longer able to see them, my tongue seems swollen with ridges around the outside and looks smooth in appearance.

My speech has been clumsy and I’ve been feeling seriously fatigued. I also seem to have some balance issues since this started.

I’m wondering if this is similar to any one’s symptoms and also does anyone know any other neurologists in Sydney / Canberra that they could suggest as I’m hoping to see someone before 6 weeks.

Thank you for your time and appreciate anything information you have to offer.
 
I'm sorry a GP has suggest MND at such an early stage with no real evidence, that's really stressful.
6 weeks is not really very long to wait in terms of what we all have usually had to wait, so try not to sweat that one.
You will probably start to hyperfocus on things now, I can only say try not to do that as it will not help you at all.

My husband was bulbar onset.
Do you feel your speech is 'clumsy' (not sure what that means) or are people commenting on your speech?

Try reading this post to understand more about MND and I'm giving some Sydney links.

NEW SOUTH WALES​

Calvary Health Care MND Service
91–111 Rocky Point Road, Kogarah NSW 2217
Contact: Coordinator Donna Berry
T: (02) 9553 3444 (direct) or (02) 9553 3111
E: [email protected]
Fax: (02) 95881635

St Joseph's Hospital MND Clinic
2A Normanby Rd, Auburn, NSW 2144
Contact: Coordinator Julie Labra
T: (02) 9749 0211 (Mon–Thurs)
E: [email protected]

Liverpool Hospital MND Clinic
Corner Elizabeth & Goulburn Streets, Liverpool NSW 2170
Contact via reception (02) 8738 3000 & ask for MND clinic
Fax: (02) 8738 4102

Macquarie Neurology Clinic
Suite 204, level 2, 2 Technology Place
Macquarie University, NSW, 2109
Contact: CNC Kristina Barnes
T: (02) 9812 3742 (Kristina)
E: [email protected]

Forefront MND/FTD Clinic
Brain and Mind Centre
Level 4/94 Mallett Street, Camperdown, NSW 2050
Contact: Co-ordinator Hannah Timmins
T: (02) 9351-0976 (Monday-Friday)
F: (02) 9114-4254
E: [email protected]
MND Clinical Nurse Consultant: Margie Zoing
T: 0418 617 681 or (02) 9114-4265
E: [email protected]

ALS/MND Multidisciplinary Clinic
Brain and Nerve Research Center, Concord Hospital
Building 20, Level 1, Hospital Rd, Concord, NSW 2139
T: 9767 8447
E: [email protected] or [email protected]
 
Unsettled, it looks like you've already had some help from many people here over the years. You've been a member here since May of 2013 and had a few threads. Since your last post in 2014, it doesn't sound like anything has changed. If you had MND, you would have been profoundly disabled by now, as it's been 9 years from your first post on this forum.

I am assuming you have been followed by the same gp over the years? Or your gp has access to your previous records if they are new to you?

You've been given some contacts above- hopefully you will be able to receive the help and reassurance you need from one of them.

Take care





 
Last edited:
I find it so very sad that you've spent nearly a decade of your life focusing on a disease you don't have. Have you reached out to mental health professional about your fears? There's a phobia called "nosophobia disoder" where an individual hyperfocuses on a specific disease they don't have. This hyperfocus turns into a compulsion to read about the disease, watch movies about the disease, and basically give one's entire life over to focusing on this one illness.

One's mind is so powerful that if one doesn't get help, one can spend year after year wasting time one will never get back. Please, you're so young still, go speak to someone.
 
Thank you for your responses, it has been a long time since I came on here to ask a question but what ever is going on has come back on as of 6-7 weeks ago. My right side just stopped, the weird weakness never improved or got worse, it just stopped progressing, the right side of my tongue has been weak for 9 years and only mildly atrophied.

It’s just now on the left side. I do have people asking me to repeat myself because i’ve stumbled over letters with T’s, D’s and S. I usually have to say it louder as speaking softly is impossible.

I thought it may have paused and something has triggered it to come back on my left side this time. This is a different doctor, as I moved interstate but when she said MND, I didn’t mention it as I didn’t want to be suggestive, I spirialed back into a panic. I just don’t want there to be a possibility that my children get it.
 
This really is something you must take up with your doctors. 9 years is a long time with no progression- ALS/MND is a relentlessly progressive disease, with bulbar generally being the most quickly progressing. You have been given resources (see above), so you will be able to seek the appropriate care.

Have a look through the Read Before Posting link as well, as it does contain information that may not have been posted the last time you were active on this forum.

Take care
 
Last edited:
Honestly, MND doesn't take holidays, nor take 9 years to get to a diagnostic point.

GP's are not qualified to diagnose it either. Just like it wasn't MND last time, I'd be totally surprised if it suddenly was now. But by all means get checked, just believe the specialists.
 
Status
Not open for further replies.
Back
Top