Recommendations for neurologist in Sydney Aus

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Cathy123

New member
Joined
Aug 17, 2022
Messages
5
Reason
Learn about ALS
Diagnosis
00/0000
Country
AU
State
NS
City
NSW
Hi everyone, I'm new here and undiagnosed. I live about 3.5 hrs from Sydney and there really are no neurologists in the regional areas.
Please delete my post if it breaks rules, privacy, etc but I was wondering if anyone can reommend a neurologist familiar in this feild, in or close to Sydney NSW.
 
Hi Cathy-

This is a perfectly reasonable request! I've moved your post to the section reserved for those who have not been diagnosed.

Sorry you find yourself here having to look for neuro recommendations. I am sure one of our Australian members will weigh in shortly with any recommendations they may have.

~F
 
I am not in Oz but McQuarie has an MND center in Sydney. The doctor I am familiar with is Dominic Rowe because of his FALS work but there are other MND specialists there
 
Cathy you don't indicate whether you are north, south or west of Sydney.
Dominic Rowe is highly regarded, but I wouldn't feel the need to see him first necessarily, but would certainly pick him for the second opinion if you are diagnosed.
Contact MND NSW for some personal help, sorry I can't link to them for you as they sell merchandise.
this are the MND clinics but they are not your only choices

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]
 
This may come as a pleasant change of focus. I do NOT have twitches, fasciculations, muscle atrophy, problems with my speech, swallowing etc. AND I do not believe I have ALS.

BUT, I do know I have something neurological going on. Possibly UMND.

The first indication was a nurse at my local GP clinic asked what I had done to myself, she said I was walking strangely (I hadn’t even realised), walked into the doctors office and he asked the same question as the nurse. Long story short. Over following months/year had NCS, SSEP, EMG and blood tests for numerous conditions. Brain and full spine MRI studies done in Jan 2022 and repeated in late July 2022 at request of neurosurgeon (whom performed L4/5 decompression surgery in early 2021 for severe spinal stenosis resulting in neurogenic claudication). Checked for NPH and cerebellar disfunction. Checked for cervical myelopathy. All clear.

I am steadily losing my ability to walk due to my legs not wanting to cooperate and intend to purchase a lightweight mobility scooter so I can continue to be independent and do my own shopping and walk my dog.

I'll be seeing my GP tomorrow for a referral to Macquarie Neurology Clinic. I will post again after I see Neurologist.

Thank you to Affected for your information re specialists in Sydney. I live south of Sydney but my daughter, whom I will stay with in Sydney, lives very close to Macquarie Park.

Thank you to ShiftKicker who I noticed is suffering UMND, something that I know is extremely rare for redirecting my first post.

Any advice re: mobility scooters would be highly appreciated, as would any general considerations that this is possibly UMND of some variant.
 
I'm so depressed and dont know where to turn next. Most recent MRI (No. 6 this year) was of the thighs to check for anything unusual in the muscles. My neuro thought this a less invasive approach than a mucsle biopsy. I'm glad she did as she said it showed nothing abnormal.
My thighs are weak and i'm walking with a cane, my arms and hands are getting weaker.
I can't work and can't even get a disability pension because I am not diagnosed.

Sorry everyone... just needed to vent my frustrations.
 
So you saw a neurologist and she ordered a test which did not yield an answer. If she examined you and saw issues surely she did not say go away without giving you a plan? I would think she would plan follow up tests or visits if she felt your issues neurological or if she thought they were due to another cause suggest where to follow up - gp or another specialty. Unfortunately neurological issues can take a while to pin down
 
Which MND clinic did you end up attending Cathy?
Your doctor surely has a diagnostic plan, what are they saying?
 
Hi Nikki J, sometimes I dont express myself very well. She is sending a letter to my GP to update him on results. One thing noted on x rays was inflammation of ligaments and tendons at the hip and so, has asked me to see Physio for exercise. At this point she can't see anything neurological which is good news. (y)
 
So the mri DID show something and you are being sent to pt. You were told not neurological but you have inflammation? Inflammation is almost always treatable You might ask if you should consult a rheumatologist. However far from being depressed you should be thrilled that you don’t have a neurological issue especially not ALS. And you know what to do next so no need to wonder where to turn. This is excellent news and you should have every hope of getting better. Good luck
 
Cathy, please answer all questions we as senior members ask, I'm an Aussie in NSW, so I could be of help.
You have said you don't believe you have ALS. I think you need to clarify carefully here.

Take your time making your answers here so you are as clear as possible.
 
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