Wondering what MS teams are like in area I may be moving to

Live with my parents and they intend to move to be closer to my sister and her kids. My MS here in Coventry is pretty good. Curious to know if anyone has experience of MS teams in the areas they’re looking at.

Lytham St Annes
Ribble Valley

Not heard of Padiham for years, isn’t Burnley the nearest large hospital? And Blackpool(Victoria) closest to Lytham?

I haven’t heard of Padiham at all. Wasn’t even sure it was a real place.

No idea what hospitals would be in the area. They still discussing stuff and looking at stats of areas. I only just managed to get a list of places they’ve been looking at.

Seen various comments about subpar treatment on here over the year but can’t remember where and even then it could have improved since I saw it.
Thought if I could get feedback on MS teams in those areas I’d may be ale to nudge them away from anywhere that is lacking and towards somewhere better.

Next door neighbour used to work at Padiham power station, prob gone now! I think Chorley is Ribble Valley, don’t know about MS services but people are v.friendly! I think Chorley has 2 hospitals (think!)…I love Chorley cakes. Things do change so fast I would never hav thought Stoke would become a centre of excellence.

Might be worth contacting the local branch.

Local Support for People With MS | Multiple Sclerosis Society UK (mssociety.org.uk)

Thats why my parents are looking up that way. They visited my sister a few times and had a look around some areas. I’d struggle by myself and honestly council housing can be hard to get, may not be the best are either.

Thanks, I’ll have a look in the morning, won’t take it all in now. Only 5pm and I already want to call it a day :yawning_face:

There is some.lovely.countryside in Lancashire, Padiham must have a good view of Pendle Hill village around there (Roughlee) is gorgeous!,nothing like Stoke!

That’s an interesting question for me too. My partner is well set up in London, but needs to move to a bungalow, so is moving to Mid Suffolk. Does anyone know what MS services etc are like there?

Interesting that you’re leaving Coventry and rate them as good.

I have found them at time very frustrating to deal with! I have PPMS (diagnosed 18 months ago but retrospectively believe I’ve had “it” for 9 years). My reading of the situation is that they are well-organised to treat RRMS patients with DMT’s up at UHCW but less helpful to Progressive cases which can be much more aggressive in the speed that the disease takes hold. What’s your view (and feel free to message me if not comfortable sharing on the public forum).

Don’t need to PM. Sure others have read or experience similar. Not like anyone knows me in person or where I live :smiley:

Diagnosed with RRMS in 2014 a week after my birthday so nice present there. RR so can’t comment on progressive side of things but I’ve got no compaints and only met a few people with a progressive version and that was in the physio department and didn’t hear anything bad.

Diagnosis was nice and quick. Well nice considering MS the outcome. I happened to have a major relapse a week before my referal to a Neurologist. Went to A&E for Double vision and mentioned everything else and that I was due to see a Neurologist a week later. From then things went quickly…compared to some peopes I’ve read anyway.

Since I’ve been diagnosed I’ve been through various treatments. Lower tier up to top tier. Lower tiered stuff either didn’t work at all or gave me liver function test results like I was downing a litre of Vodka daily for more than a decade. Even when I skipped 4 out of the 6 Rebiff shots I should have taken over the 2 weeks :astonished:

Not as agressive as Progressive but I was relapsing quite a lot, highly active, and ended up on crutches amongst other stuff. Went on Tysabri, which I loved even with the tiredness I got a week before next infusion. Was high on JCV when I started. I believe >1.5 was considered high so Tysabri should only be used for 2 years. I jumped to 4.58. 4.58 was apperently highest seen at the hospital so had to come of Tysabri. Tried a pill, can’t remember name, but relapsed multiple times in a few months. Then went onto Lemtrada.

First infusions were fine and no relapses. 2nd infusions a year later which should have been it. I started relapsing 2 years later and got on a 3rd course shortly after. Started relapsing 18months or so later. Kind of struggling for DMT that would work and not high risk. Still JCV 3.36 so Neurologist not comfortable me going back on that. Waiting for Stem cell treatment which could be a year or more based at a London hospital and still no idea if I’ll be accepted. Did read up last year and I’m kinda close to the cut off criteria.

Contacting the nurses via answer phone wasn’t my prefered option but it worked. So glad they now have an email so I don’t have to talk and can take my time to edit what I’m saying. I can mix things up or insert random words mid sentence and can’t edit in my head when talking. Always quick to believe me saying I’m relapsing, don’t have a UTI (started checking myself) and had my GP practice confirm I don’t have one. Even if the practice only confirmed it to me. Depending on Relapse symptoms they’d then either book me in for Steroid infusions to speed up recovery, provided I could make it to the hospital or they push through a request for Oral Steroids to my GP. Been Oral Steriods since Covid.

Referrals to Physio took a week for my first appointment, I think.
Referrals for Urology took close to a month before my appointment. Not the MS departments fault for it taking a while to get an Appointment.

Increased some of my meds when certain things got worse. Increased Gabapentin from 900mg 3x a day upto 1200mg 3x a day. Really didn’t like it that so high so I reduced it back to 900 and we increased the Amitriptyline instead. That helped with the symptom Gabapentin was being increased for and also helped with the low level burning in my feet and legs. Kinda got used to some burning. Was using it as an early warning systom to know if I was doing to much. Little burn in the evenings = ok. burning by noon = done too much it’s gonna be bad tonight. Now I get it late evening when I’ve done too much. Said I could have it a little higher but are fine with me leaving it as is.

Not enttirely sure if thats what you wanted. Got a lttle carried away here. Memory not so good nowadays. Tried reading this a few times to cut trim it but end up forgetting what I read/wrote at the start. I know there isn’t as many DMTs for progressive MS and there are considrably less diagnosis of the progessive types. So they are not as experienced dealing with that variant and are also limited in treatment options.

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Wow! You have been busy and it sounds like they’ve been very proactive with your treatments and changed things around to optimise effectiveness as your body became intolerant of each DMT in turn. Short of a cure, there’s not much else you can ask for.

I guess if moving away, it would be worth making sure the prospective new health trusts are offering the right meds that work for you. I’ve discovered that local NHS Trusts can make their own selection of what meds to offer, so just because a med gets NICE approval doesn’t guarantee availability of your preferred DMT. You might need to go to Trust B instead of Trust A and your new GP can help place you with the right Trust.

Yup, lucky I have a good team here. Can be slow at times but if it’s nothing major it never bothered me as I’m happy to have it a little slow if others need help more than I do.

I’ve heard that the Neurologist has been discussing my treatment several times over the years. Think I’m the awkward one :smiley: Was disappointed when they took me of Tysabri but I understood why. Think several of the original MS nurses have left now but the ones I’ve spoken to in recent years still seem quite on the ball.

Even been told off a few times for not mentioning some of my milder relapses. Mild sensory, little off balance and stuff. Kinda stuff that just blends with part of my usual day to day which is up and down anyway. Don’t want steroids for those. Rather save them should I have nasty relapses. Not supposed to have more than 3 rounds in a 1 year period. Done that once and only because I was relapsing with Optic Neuritis and they didn’t want prolonged damage on the optic nerve, still have a little though :frowning:

My GP is pretty good. Trying to get through on the phone is a nightmare so I pop up first thing in the morning. Receptionist know me and always helps me out. Whether thats getting me an appointment or just to nudge whoever does prescriptions to authorise an Oral Steroid requests from the MS nurses. Several times since Covid they speed up alternate perscription requests when the chemist can’t get my usual medications and I need something else.

Really not looking forward to moving :frowning: