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9 months ago

How far are you prepared to travel? I see you’re in Clitheroe, so if you didn’t want to go further than (say) Manchester, you could post here asking for names of good neuros there and get names via PMs on the site (we can’t post names publicly). People who don’t understand how poor our facilities are locally think I’m mad to travel to London, It’s a two-hour journey but I don’t go particularly often: where possible, the staff at Queen Square combine appointments for me and other times we are in contact via the phone. But the effort in travel is far, far less than the struggle I would have faced locally. I was determined to be seen in a centre of excellence – there are many outside London but you’ll need local knowledge and recommendations. It’s not just having one good neuro – it’s how the MS service is set up, the philosophy of the department, how good their patient communications are and the quality of the MS nurses. That’s important because under NHS guidelines, you can be treated anywhere in England but you can’t choose your consultant. If the department is ‘solid’, it won’t matter who you see within it because they’ll share the guiding principles. That’s why teaching hospitals are often the most successful and forward-looking – consultants are likely to be involved in research and will be top of their game. That’s what we want!

9 months ago

Yeh good idea I might do that then I wasn’t aware that you couldn’t post about neurologists on here , so hopefully people will pm me.

I am with a teaching hospital but the communications etc are bad, waiting times bad ., a lot of things are bad admin etc .
I think I might need a team locally and I’m frustrated with it
My nhs neurologist I like him but snowed under so hard to ask the things I want as not the time and I’m not sure wether he’s on the same wavelength as me or not really . The Neurologist guy I saw the other day is part of the same team but was private . I don’t think we are on the same wavelength at all
I want them to be positive with me and give me a sense of “hope” not “life’s over” which I feel that vibe .

He says stem cells can kill you etc true but I don’t want to here that ! The evidence is very low like what Paul Morrison said whose just come back from Russia ! Why be so pessimistic like that?
Why not mention positive things about stem cell S too ?
It’s frustrating when your living with this condition it is ! I get fed up of the negativity and pessimism . Give us hope not fear ! Like you said also want people top Of game who get it to help !

Where do you travel from to see yours ? Are you near London then?

I might have to pay to see neurologist but locally I might need a nhs team for ms .
I wonder who I could see thats a good neurologist that I could pay to see . I might have to travel but maybe need too .
I’m looking for someone who optimistic , proactive positive towards it .., not everything they focus on is the negative in it ! Like it can’t be done .
I just want to get it sorted so I feel more confident and less worried about it all .
Rachael x

9 months ago

are you being seen by a MS specialist? are you not on a DMD out of choice or because you chose not to?
as you’re not far from Manchester its worth maybe looking at the MS team at Salford Royal Infirmary on their webpage it seems like the main neurologist there is forward thinking and there are 5 MS specialist nurses
i know however web pages can make a centre seem great when they’re not!
don’t think you need to travel much further than Manchester, London centres are not all they’re cracked up to be; speaking from personal experience at the Hospital mentioned in the previous post ;-(
i suggest you save your energy to focus on getting the outcome you want i.e. to see a proactive team and to provide you with appropriate support. i meditate to deal with my exasperation at the what is currently (un)available
good luck

9 months ago

The main MS centres that I am aware of are Sheffield, Edinburgh, Barts (London), Oxford, Wales (not Swansea, my ability to recall names at times is appalling, I apologise to any Welsh people).

There are others I’m sure but I mean the centres of clinical research into MS. They tend to attract neurologists who are particularly interested in MS and v similar conditions.

And I imagine many of the MS charities have links to and views on this topic.

9 months ago

@bernadette – thanks for your post

Could you pm me the main one at salford of the weblink to it who is forward thinking etc .
Do you go to this centre ?
Yes they all have fancy websites that make them sound brilliant but when their not . It’s hard to pick the ones that actually do and are what they say . Probably few and far between.

I just thought maybe London is my best bet but like you say “not all cracked upto be either “

No I’m not being seen by a ms specialist they are general neurology !
Also as for the dmd – i was diagnosed last year and my neurologist said he didn’t want to put me on dmd at the moment and if you have another attack then we will look into dmds. Also I was / am wanting children so that also played a roll .
Also I have tried for a year so far to get it more under control ( inflammation) by following the Whals protocol for diet and lifestyle changes but it can take upto 5 years to get back in balance . ( many imbalances and takes time )
So still probably 4 years to go . My relapse this time as come after two mercury removals . It started the day after so some thing happened their . It wasn’t the dentist as I chose carefully .

I just want my answers and get frustrated but it doesn’t help the ms side of things
I do meditate . What do you use for this ? I have a few apps and honest guys on YouTube is fab – they are guided and calming .
How often do you meditate? Maybe meditated some more 😊

I do chakra balancing routine in the morning with deep breathing .
I use honest guys in the morning for 15-30 mins and I put them on in the evening to try and wind down for bed – theirs a sleep talkdown one !
I also try to fit in deep breathes x 10 every hour ! But I’m failing miserably at this !


9 months ago

Oh and I close it down the chakras and day before sleep

9 months ago

@dominics – thanks very much, really helpful xx

9 months ago

Hi there, the treattment I am getting is specific to me. I have tried different treatment. See what works best for you.

Chase farn/ Royal free/ Barnet. Under Heather Wilson.

all the best.

9 months ago

Hi Mark – @markstuart

Is that where you are at chase farm? Wheres that Mark?


Rachael xx

9 months ago

Chase Farm is near Enfield. M25, jn 24.

9 months ago

rachaellouise no wonder you’re fed up! seeing a general neurologist is not on, everyone with MS needs to be seeing a neurologist who is a MS specialist. end of.
on googling MS specialist hospital services near Manchester the site for Salford Royal came up, but there are also specialists in Manchester Royal Infirmary. I can’t recommend any personally as i am treated in London. I don’t think it makes much difference which person you pick as you haven’t seen a specialist at all yet!
My rule of thumb when looking for a consultant (for any specialty) is look for someone youngish, is there any evidence of them being research active, so they do NHS work as well as Private, mostly likely in the MS world those Drs are going to take the view to treat early and actively.
get your GP to write you a referral asap. If you can pay for a private consultation you will be seen more quickly and thereafter ask them to see you in their NHS practice.
i waited initially for 3 months, i recently transferred to a different consultant in the same hospital and that took 4 months. sent me potty ;-( But keep calm and carry on…i tell myself.
there are a couple of DMD that can be taken even if you are planning pregnancy.
for sources of information and help try the MS Trust website.
recently i have also been accessing there is helpful info there
Personally I like Jon Kabat-Zinn for guided meditations – see online, but i noted that the most popular app last year was InsightTimer
hope it helps

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