Ask an expert – about Motor Neurone Disease 

Dr Nikhil Sharma

June is Motor Neurone Disease (MND) awareness month and we had two experts, Jan Clarke and Dr Nikhil Sharma, answering your questions on our web chat. Jan Clarke is a specialist nurse  and Dr Nik Sharma is a consultant neurologist at the world renowned National Hospital Neurology and Neurosurgery. Dr Nik Sharma  is also a Senior Clinical Researcher at the MRC Unit for Lifelong Health and Ageing at UCL (LHA) and has a long standing research interest in degeneration of the motor system.

You can read a transcript of the web chat below.


1:30 UCLH: 
Welcome to our web chat on Motor Neurone Disease (MND) with Dr Nikhil Sharma and Jan Clarke - Specialist Nurse.

We will begin at 2pm but you can submit your questions now and we'll answer as soon as we can.

Your questions will not appear in the chat window until after 2pm and will be answered in order of arrival, so please be patient.
 
2:01 Nikhil Sharma/Jan Clark: 
Hi this is Jan & Nik. Looking forward your questions. A couple have already arrived so we'll start answering them shortly.
 
2:03 [Comment From RebeccaRebecca: ] 
What are the tell-tale signs of MND?
 
2:04 Nikhil Sharma/Jan Clark: 
Thanks Rebecca! Great question! Difficult to answer concisely- it varies tremendously between people and no two people are the same. The MNDA have a great page that outlines the key aspects in detail. http://www.mndassociation.o...
 
2:06 [Comment From SeamusSeamus: ] 
How many different typres of MND are there and are they all life threatening?
 
2:06 Nikhil Sharma/Jan Clark: 
Thanks for the question Seamus. There are different types of MND that vary a lot in their outlook. The broad types include Amyotrophic lateral sclerosis (ALS), progressive bulbar palsy (PBP), progressive muscular atrophy (PMA), primary lateral sclerosis (PLS) and Kennedy’s disease. More information on the MNDA page:
http://www.mndassociation.o...
 
2:12 [Comment From greggreg: ] 
Do twitches in arms/legs mean MND? How common are twitches in muscles for people without MND?
 
2:12 Nikhil Sharma/Jan Clark: 
Good question Greg. Muscle twitching is actually very common and in isolation this is unlikely to be MND. But of course if you have concerns then it is best to see your GP.
 
2:17 [Comment From JulieJulie: ] 
Can alternative therapies help manage my MND? I don't want to rely on medication alone.
 
2:17 Nikhil Sharma/Jan Clark: 
Thanks Julie. There is little scientific evidence to support their use in MND but many patients find it very supportive. Obviously it should not be expensive or promise a cure.
 
2:20 [Comment From greggreg: ] 
Why doesn't/don't any of the MS treatments work for MND patients?
 
2:20 Nikhil Sharma/Jan Clark: 
Thanks Greg. Excellent question. Multiple sclerosis (MS) and Motor Neuron Disease (MND) are two separate diseases therefore treatments for one wouldn’t necessarily work for the other.
 
2:21 [Comment From IndiaIndia: ] 
I have read that recreational drugs can affect the motor neurone system - any evidence on this? I took lots of MDNA back in the late 90s should I be worried?
 
2:22 Nikhil Sharma/Jan Clark: 
Thanks India. Recreational drugs can affect the motor system , but I am not aware of any connection with MND.
 
2:28 [Comment From MarkMark: ] 
I've been diagnosed with MND. If I come to your clinic, who am I likely to be seen by, a consultant? Nurse?
 
2:29 Nikhil Sharma/Jan Clark: 
Really important question Mark. Our team is made up of many different members that each have a really important role. There is a specialist nurse, physiotherapist, occupational therapist, speech therapist and a dietician. Oh and of course the consultant neurologists.

We also have an excellent team who we refer on to in the community.

Finally we are very lucky at the National to have the UK’s first Neuromuscular Complex care centre (NMCCC) for in patients (http://www.uclh.nhs.uk/OurS...)
 
2:34 [Comment From PeterPeter: ] 
How has Stephen Hawking had MND for so long?
 
2:35 Nikhil Sharma/Jan Clark: 
Great question Peter. One of the most important things that we tell our patients is how variable MND is and how each person is absolutely unique. Stephen Hawking is an extraordinary person and is a great example of how variable MND can be.
 
2:40 [Comment From AndrewAndrew: ] 
Is there a test for MND?
 
2:41 Nikhil Sharma/Jan Clark: 
Thanks Andy. There no single diagnostic test. Often the investigations are performed to exclude other conditions that may mimic MND. The MNDA have a good page on the typical investigations done which can be found at;
http://www.mndassociation.o...
 
2:45 [Comment From PeterPeter: ] 
Okay thank you, I have seen the Sheffield snood head support and I was just wondering if it possible to get this, or do you know how I would be able to trial it?
 
2:46 Nikhil Sharma/Jan Clark: 
Brilliant question Peter. You are very well informed! For those who haven’t heard of this, the snood is a new prototype collar designed to help support the head in people with a weak neck and MND. It looks great but I am not aware that it is available just yet!
 
2:52 [Comment From SelbySelby: ] 
I've heard of NIV. What is it?
 
2:52 Nikhil Sharma/Jan Clark: 
Thanks Selby. NIV stands for non invasive ventilation - a breathing machine. Some people with MND can have trouble with their breathing and this can be supported by using NIV.

At the National Hospital we have a great deal of experience in using NIV in MND and were the first centre the UK to offer this service.
 
2:56 [Comment From IanIan: ] 
Who do you believe is the closest to finding a potential cure & is there much exchanging of global research?
 
2:57 Nikhil Sharma/Jan Clark: 
Thanks Ian.

The research in MND is very much a global effort and we are all in close communication with each other. There are several international meetings to exchange ideas and discuss the latest findings. The MNDA organises an international symposium once a year that will be taking place in Orlando, Florida in December 2015.
 
3:00 Nikhil Sharma/Jan Clark: 
Thank you for some great questions! Here are links to some useful websites.

Our service:
https://www.uclh.nhs.uk/Our...

Motor Neurone Disease Association:
http://www.mndassociation.org/

NHS choices:
http://www.nhs.uk/Pages/Hom...
 

 Useful links