Thanks Sue for a really helpful reply…I will follow your advice…want a specialist to start with and then keep it local.
And that is a brilliant link Fay. It makes total sense to redefine some of us as having ‘Advanced MS’ rather than relying on the old labels of RR, SP and PP. Those labels are completely irrelevant when considering disability since the level of disease progression is not related to the ‘type’ of MS a person has been labelled as having.
In future, I’m going to aim to describe my MS as advanced. Since my neurologist is reluctant to label my MS at all, and I have pretty much ticked all the boxes for advanced MS as described in the report, it fits much better than an old fashioned RR/SP label.
Sue
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How nice to see this thread up and running again. Did people notice that it’s Jeremy Chataway who is running the Phase 3 trial on Simvastatin for SPMS that’s been in the news? Still the special one in my book (although Gavin Giovannini is definitely special too).
Hi Mitch
Can recommend Dr Jonathon Chan based at Maidstone Hospital NHS and with a private clinic at The SpIre Hospital in Chatham.
He initially diagnosed my MS and gave me initial steroids. He then referred me to Dr Benjamin Turner (MS specialist consultant in London for further treatment. I am currently under Dr Turner.
Hope that is of some help.
Giova
[quote=AngelaGreen]
Mine is Roswell Martin (Gloucester & Cheltenham hospitals)
No complaints so far!
A friend of mine also gave me the name of her neuro in Bristol as highly recommended, but have since forgotten it 
[/quote
I have seen him twice as a locum he didn’t agree with my own neuro got me tested for sogrens then diabetes
Neither off witch I have and still got my symtoms
Jonathan Orierdon ninewells is a top class neuro ms man.
For those of us who live in Wales, can I put a quick word in for my lovely Neuro - Valentina Thomassini and the rest of her team at the Helen Durham centre at University Hospital of Wales in Cardiff. Brilliant and part of the big research projects based around Cardiff University and the CUBRIC imaging centre too. (I don’t think she has a private practice though)
Hey guys, I’ve been referred by my GP’s secretary to Lister Hospital Stevenage for treatment (diagnosis was via private healthcare). I’m not sure if he/she picked this hospital because it was the earliest appointment with a neurology department or whether there’s actually a treating neurologist there. Don’t suppose anyone knows?
Does anyone see a neuro in cumbria or lancashire, please? I can’t find much info. so far (just basics re the referral process) and would really appreciate any thoughts as cumbria seem to triage referrals to barrow-in-furness/penrith/kendal
The hospital doesn’t appear to be an MS Centre
http://www.enherts-tr.nhs.uk/patients-visitors/our-services/neurology/
But there is an MS Therapy Centre for physio etc.,. Could ask there advice.
MS Therapy Centre
Fay
Need urgent second opinion for my Dad suffering from MS from last 10 years and it only seems to worsen each day , his treatment has changed thrice but with no ray of hope
Pls suggest the way forward and how to get the second opinion
Your post has been added to an old post about neurologists and you’ll probably get a better response on your own thread.
Hi , I am new and I am from Iran , I am looking for some information about Hospital and Doctor to follow my treatment in UK .Thank you to help me .
I am under professor cicarelli at the national. Although after two appointments haven’t actually met her
Trying to change consultant at the national. Can anyone tell me how to go about this?
I see Dr Wallace Brownlee - National Hospital for Neurology and Neurosurgery - he is a truly fabulous consultant. Goes above and beyond. Truly grateful we have access to these Drs.
I see Dr Brownlee too at the National in Queen Square. Really good. I think he’s also at the NHS hospital in Stevenage.
Louise
Good or bad Care
I was reading an old comment re good or bad neurologists across the country. I also read the list of top neurologists.
Be careful. I nursed my brother through the ravages of MS- and we were more or less left to our own devices, the neurologist offered not a single thing of any real help and he’s on the top list and to be fair the MS nurse was pleasant but a complete waste of time- she could offer nothing.
Hospitals. left all day in urine soaked beds lack of food and drink put in a place where it could be reached. Bed sores- general lack of personal hygiene- led to countless infections. Was sent home with other peoples drugs - once he was nearly sent home to someone else’s house and I nearly ended up with taking delivery of an old aged pensioner. It was shameful. No one cared when we told them!! He was once left in the queue for an ambulance home on a plastic chair with no arms( he was bedridden for 10 years- no arm or leg movement) He fell off- no surprise aye- they did not care when we told them.
sent home from a hospital stay with a catheter that should not have been there- hospital sent a woman to remove it - she arrived and said they thought it was a canular- she went away- no one else could come for 24 hours- never had a cathetar before - we had no bags - they sent a cab with two bags in it. No one came to remove it for three days !!
GP - rude receptionists whose negligence caused my brother to be blue lighted to hospital on more than one occasion when a Dr would not be sent when required.
This is just touching the surface of the painful journey made a million times worst by all of these people.
Thank God I was there to give him love and support and thank God for the absolute love and care of his home carers who get paid a pittance and in fact often lose money paying for their own petrol. In truth they were the only ones that helped us.
We were left to research and diagnose and treat each horrendous symptom as it came along.
Sadly my lovely Brother is no longer here and three years on I still have counselling and take medication to try to recover from the trauma of abandonment that we both felt.
I know so much about this awful disease- too much really, and what it takes to live with it and in spite of it. How sad that we had to do this all alone.
If you live in the South East of England, the Bexley area and you are diagnosed with MS I would strongly advise that you move away from the area as quickly as possible in order that you can be appropriately cared for and supported in the way that you should be.