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Advice needed

After agreeing to give me ldn my gp after research said it’s too expensive and nothing is proven it helps Ms, he’s writing to my neurologist, he seems worried that baclofen and Pregabalin isn’t helping I told him Pregabalin helps with nerve pain what else will I put on if anyone knows Thanks xx

Not sure where your GP gets “too expensive” from…ldn costs £18.50 a bottle which lasts me approx one month. Sorry can’t comment on nerve pain drugs as no experience of any.

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Hi Alysea. I get nerve pain and I’m on Gabapentin, Amitriptyline, Paracetamol and Morphine. I struggled for a year or so on different tablets and dosages until we found a regime that suits me. The Gabapentin, Paracetamol and Amitriptyline were started early and dosages adjusted but the morphine was a last resort after other painkillers like Codeine and Tramadol weren’t effective.

Nerve pain is notoriously difficult to get under control but don’t sit back and live with it, the longer you leave it the more sensitive your body gets and you get to a point where your body becomes hyper sensitive and interprets every stimulus as painful. That’s very uncomfortable and life becomes really unbearable.

It might take a while to get on top of it but there are drugs available on the nhs to control pain. Good luck.

Cath x

Thanks, my walking and bladder is worse part, and I told gp it was that much and he said £500 a month from what he’s researched and my mum looked it up for same price he feels bad for not being able to give it, he’s also said nothing has proven it helps Ms.

My mum after looking up has realised progressive Ms can’t be slowed down she is desperate to have me walking again, just ordered a Ms exercise dvd see if that can help stiffness, I am losing weight too see if that helps, bladder nurse scanned me 4 times but not coming back.

I have vertigo so balance has been really bad so bad that I can’t even do the exercises I was given, I want to be able to leave house but right now I can’t legs too weak and bad balance.

Thanks xx

Not sure where your GP is researching as an Article in the Mail on line by a lady with MS states it would cost 82p a day/£300 a year. I certainly couldn’t afford £500 per month. Unless the tablet form is way more expensive than the liquid! The liquid is an acquired taste but certainly bearable and worth approx £25 per month. Please do question this and check out the LDN Research Trust for more info. It is only by doing my own research and requesting it that GP/Neuro agreed I could take it - but I must pay myself. Try it … you might find it helps.

Hope you do and it does.

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Yes will they accept my proof of Ms via email if I scan it through, I’ll just go private, what I’ve read is the liquid isn’t prooven but the tablet form is God knows Lol

now it’s just waiting for Ms nurses and neuro appointment see what’s going to happen next I guess.

Thanks x

Yes Alysea you can scan it and send it.

Makes no difference if it’s tablet or liquid… it’s exactly the same drug in both.

Pat xx

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Yeah thanks Pat xx

My bladder and bowels is getting worse so will try anything.

Im 35 but feel 90 I’m in bad shape right now so will try anything.

Thanks xx