Muscle Disease Unit

Muscle Disease Unit

Overview

The Muscle Disease Unit at the Manchester Centre for Clinical Neuroscience provides a tertiary muscle service for people in Greater Manchester, and from further afield for some rare conditions. We provide expert multi-disciplinary specialist opinions for adults with confirmed or suspected:
•    Complex and undiagnosed muscle disorders
•    Muscular dystrophies (e.g. Becker dystrophy)
•    Myotonic dystrophy
•    Inflammatory muscle diseases (e.g. Inclusion body myositis)
•    Metabolic myopathies (e.g. McArdle disease, Pompe disease)
•    Spinal muscular atrophy (including delivery of Nusinersen Managed Access Agreement)
•    Mitochondrial disorders 
•    Patients transitioning from paediatric to adult care


Our Team

The Muscle Disease Unit includes a broad complement of experienced neurologists, specialist nurses, and other colleagues:
•    Neurology (Dr Mark Roberts, Dr James Lilleker, Dr Tamas Cseh)
•    Nurse Specialist and Care Advisor (Phil Kelly)
•    Neurophysiologists (Dr Ronan Macdonagh, Dr Ranjit Ramdasss)
•    Neuropathologists (Prof. Federico Roncaroli, Dr Daniel DuPlessis)
•    Metabolic medicine (Dr Reena Sharma, Dr Ana Jovanovic, Dr Georgetta Fanea)
•    Rheumatologists (Prof. Hector Chinoy – joint myositis clinic with Dr James Lilleker)
•    Paediatricians at Royal Manchester Children’s Hospital (Lead: Dr Imelda Hughes) and Oswestry (Lead: Prof. Tracey Willis)
•    Respiratory medicine and the Long-Term Ventilation Service at University Hospital of South Manchester (Lead: Dr Andrew Bentley)
•    Geneticists (Dr Catherine Breen, Dr Audrey Smith)
We have collaborative links with other neuromuscular centres, both in the UK (particularly in Newcastle and London) and internationally.

We are active members of the North West Adult and Paediatric Neuromuscular Network.

We are increasingly delivering novel treatments to patients with muscle wasting disease, including enzyme replacement and gene therapies.


The Patient Experience

Patients attending the muscle service will receive an expert muscle opinion.

In many cases neurophysiology (NCS/EMG) can be performed on the same day if required.

Further investigations will be arranged as necessary, and ongoing management of your condition will be discussed.

As well as having close links with local neuro-rehab centres, we also work actively with :

Muscular Dystrophy UK

www.musculardystrophyuk.org

The Winsford Neuromuscular Centre

www.nmcentre.com

Myositis UK

www.myositis.org.uk 

to help support patients living with muscle disease. 


Research

We run an active research programme in collaboration with our Clinical Research Facility and with the assistance of a clinical research fellow.

Many of our patients are enrolled in research studies, including trials of new treatments, studies looking at long term outcomes of patients with muscle disease, and genetic research. 
In collaboration with our Rheumatology colleagues, we have participated in internationally recognised research into inflammatory muscle diseases (e.g. Inclusion Body Myositis).

In addition, we have one of the largest cohorts of patients with Pompe disease in the world, many of whom have participated in clinical trials of enzyme replacement and other therapies.

We also host regular educational meetings of the North West Adult and Paediatric Neuromuscular Network.


Referrals / Contact

We generally take referrals from other specialists, especially those in general neurology and rheumatology, via the usual referral pathways.

In some instances, direct referral from the GP can be accepted. Special funding arrangements may be required for those living outside of Greater Manchester.

Please contact our secretary and coordinator for further information.

 Nichelle Hookway 0161 206 2010

 email: mdu@srft.nhs.uk

 

Referrals : email: srh-tr.salfordmdu@nhs.net

 

 

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