Living with Multiple Sclerosis – what’s new? (UCLH web chat) 

 

Bernadette Porter, the first nurse to be appointed as an NHS Multiple Sclerosis (MS) nurse consultant hosted our web chat on World MS Day. An expert in MS, Bernadette has been working with people with MS at the world renowned National Hospital for Neurology and Neurosurgery for over 20 years. The Hospital, with the UCL Institute of Neurology, is at the forefront of research and development into neurological conditions.

You can read a transcript of the web chat below.


 
 
9:18 UCLH: 
Good morning and welcome to our web chat. We will begin at 9.30am but you can submit your questions now in preparation for the chat. Please note: your questions will not appear in the main chat window until after 9.30am.

Ms Bernadette Porter will be joining us to take your questions on ‘[Living with Multiple Sclerosis (MS)]’ and will try to answer as many questions as possible within the hour long web chat.
 
9:31 Bernadette Porter: 
Welcome to our web chat on the subject of Living with Multiple Sclerosis [MS]. My name is Bernadette Porter, a Consultant Nurse in MS, and I am ready and waiting to take your questions.
 
9:35 [Comment From GuestGuest: ] 
what research is currently taking place that might find a cure for MS or help prevent it? Can I help?
 
9:43 Bernadette Porter: 
Hi. Thanks for your question. There are lots of research studies taking place across the UK. Here, at UCL at the Institute of Neurology, in the Queen’s Square MS Centre, there are lots of trials into relapsing and progressive MS including laboratory research into mechanisms that cause MS and developing new treatments, clinical trials on testing new drugs, and clinical research into new scanning techniques.

It would be great if you feel could help. If you would like to sign up, please follow this link https://www.uclh.nhs.uk/Res... and sign up for the database register.
 
9:43 [Comment From NeilNeil: ] 
I have few symptoms of MS now. What can I do to lower the risk of attacks in the future?
 
9:48 Bernadette Porter: 
Hi Neil, if you have symptoms you may be having a relapse. It may be worth speaking to your GP or, if you are a patient at UCLH, calling the team at NeuroDirect (020 3448 1102), which is open from now until midday.
If you have relapsing remitting MS and have had two attacks within the last two years then you may be eligible for disease modifying drugs that are proven to reduce the number of future attacks. It is worth talking to your consultant neurologist about these.
 
9:48 [Comment From NeilNeil: ] 
Is there anything I shouldn't do because it would aggravate the MS symptoms? For instance, I don't consider rollercoasters or anything else that de-stabilises my balance mechanism can be a good thing. Is there anything you've noticed which increases the incidence of attack.
 
9:52 Bernadette Porter: 
Hi, there’s little understanding about what causes MS attacks, and researchers are looking into this. One thing we do know however is that around 50% of MS attacks have been preceded by a bacterial infection. Of course the other 50% are not and are completely random. Of course these are hard to avoid, but if you ever feel that you do have a bacterial infection you should go to your GP, as timely treatment might help.
 
9:53 [Comment From Kathy AllenKathy Allen: ] 
Do you have any advice for dealing with skin irritation related to MS. I get really itchy legs sometimes.At present I splash them with cold water to confuse the messages to the brain- but it is not always easy to do this .
 
9:57 Bernadette Porter: 
Hi Kathy, skin irritation can be a difficult one because sometimes MS can cause people to experience strange sensations and sometimes medications can cause symptoms such as itching. If you are on medication it would be useful to check out whether itching is listed as a side effect. You may be able to ask your GP to switch you to something else. If your skin isn’t broken and you would like to try to cool it, some people have told me that they find aloe vera and/or witch-hazel gels can help. Some people have told me that they keep it in the fridge, which helps the cooling effect.
 
9:58 [Comment From LUluLUlu: ] 
I am interested in the use of cannabis for MS symptoms for my father - is there research into this and is it legal?
 
10:06 Bernadette Porter: 
Hi Lulu, thanks for your question. There is a lot of interest in the use of cannabis in MS to treat symptoms such as pain and spasticity as laboratory studies suggested that certain types of cannabinoids may protect the nervous system. There have been a lot of trials to establish if this is the case, using different approaches, which has caused mixed results. A recent controlled study with an oral spray (Sativex) derived from cannabis has shown some benefit. However, NICE did not approve this in England but it is available if people meet certain criteria following assessment in a specialist spasticity service. If interested, your GP could refer you to UCLH’s specialist spasticity service run by Dr Val Stevenson.
 
10:06 [Comment From JanetJanet: ] 
I've recently been diagnosed with MS. I have read up on alternative medication as one way to help yourself especially with fatigue. Some say alternative medicines are a waste of time and some say it works. What is your opinion on this.
 
10:25 Bernadette Porter: 
Hi Janet, if you were recently diagnosed at UCLH and would like to discuss living with MS in person, please contact our service and I would be delighted to see you in my ‘newly diagnosed clinic’. In my opinion it’s worth exploring any avenue that makes a person feel better, however a lot of alternative treatments are non evidence-based, could potentially do harm and can be very expensive.

From talking to other people living with MS, I know there is a lot of interest in alternative medications and programmes such as Overcoming MS designed by Professor Jelinek, an Australian doctor who also lives with MS. Professor Jelinek’s programme suggests a combination of alternative therapies and more evidence-based drug treatments to help people live a healthy life with MS. This is a popular programme, but is not totally evidence-based and you will need to research it fully. Here at UCLH we have the Hospital for Integrated Medicine, where Dr Peter Fisher has an interest in the use of alternative therapies in MS. You could ask your GP to refer you.

Although there’s little robust evidence about diet, there is some evidence that a diet low in animal fat and high in “good” essential fats, such as those found in oily fish, may be good for the nervous system. The other thing on diet is that we now know that there’s increasing evidence for the role of Vitamin D in MS, and it is worthwhile asking your GP to check if you have a Vitamin D deficit, as supplementation may help support your nervous system. We also exercise, including strengthening exercises and repetitive slow exercises such as pilates and yoga can help optimise the central nervous system’s compensation mechanisms.

With regards to fatigue specifically, there is now evidence that a specialist course called FACETS (Fatigue: Applying cognitive behavioural and energy effectiveness techniques to lifestyle) is effective in fatigue management. We run FACETS courses here at UCLH and if you are a patient here please contact the team and they will make a referral for you. If you are not a patient at UCLH, please go to the MS Society website, where you’ll find a list of where FACETS courses are taking place across the UK.
 
10:25 [Comment From ValerieValerie: ] 
My mother has MS and is v depressed about it - she won't go to any support groups or seek out help to talk about it - any advice on how I can support her?
 
10:33 Bernadette Porter: 
Hi Valerie, I am sorry to hear that your mum is very depressed. Depression is a common symptom in MS and almost 50% of people with MS will experience serious depression at some stage. There is some value in talk therapies such as cognitive behavioural therapy, which have been proven to work. These are often delivered in one-to-one sessions rather than in a group, and your mother may prefer that approach. Some depression in MS can be due to the pathology of the lesions as they can cause a neuro-chemical inbalance. That type of depression usually responds best to treatment with an antidepressant.

Here at UCLH we have a specialist psychology team and we would be happy to see your mum if your GP would like to make a referral. Of course your GP may also be able to help. The best thing you can do is to arrange for your mum to have an assessment with someone who is an expert in MS-related mood problems.

It’s great that you are trying to support your mum, but we know that it can be tough being a carer and it’s important that you look after yourself also. You may find tips on support for carers on the MS Society website (mssociety.org.uk).
 
10:51 Bernadette Porter: 
Thank you for joining us today in our live web chat. We hope you found the chat useful and some of your questions have been answered.

If you you like further details about our MS service, please visit our newly updated web pages at https://www.uclh.nhs.uk/OUR...
 

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