Hi I have had MS for 23 years and never had disease modifying drugs I have 8 spinal lesions and a lesion in the pons I have had no new lesions since 2021 but I feel I am progressing rapidly and becoming more and more disabled I have just found out today I have been discharged from Neurology into the care of my GP I have many problems related to my MS When I contact the GP he will ask what does your Neurologist suggest and I can give him the date of the last neurologists letter My GP will not prescribe anything without being guided to a letter from the Neurologist I was deregistered from my MS nurse without explanation over 3 years ago and I have been on a waiting list for Neuro rehab since 2022 I just donāt know how I am going to manage this illness when there is so much wrong without support I only found out Iād been discharged as I had sent an email to the Neurologist 4 months ago and not received a reply and his secretary informed me I am discharged
@mully Hi, I am so sorry to hear that you have been discharged without any correspondence as to why. I would book an appointment with your GP first and foremost, check if they received a letter explaining why, also check your NHS app if you have it to see if there was a letter.
Your GP should be able to put forward another referral to Neurology, based on firstly your proven diagnosis and secondly your worsening symptoms. At the very worse, the GP should be able to access the āadvice and guidanceā referral where the Neurologist should advise how to handle your case.
It makes me so angry how this sort of thing is allowed to happen in the NHS! It seems to be about numbers and statistics these days and not a patient centric service. Donāt lie down and accept this.
Hi @mully
I am so sorry that you are dealing with this. How can they discharge someone with a neurological disorder who is getting worse??! You deserve to be supported by a neurologist and an MS nurse.
I hope your GP is able to write to them and find out what has happened and support you with working out the way forward.
Wishing you all the best.
Alison
Bizarre behaviour. If you have an undisputed MS diagnosis, it seems impossible to imagine a consultant discharging you. Surely it would be easier to gaslight / ignore you but keep you on their books.
Perhaps if your condition was benign then they could decide you have no need for ongoing care, but youāre not symptom-free.
I suggest one of 2 courses of action:
- Complain to the PALS dept. at your NHS trust
- Report your concerns to your GP and ask to be referred to another trust for a second opinion.
Good luck with whatever you decide.
If it were me I would go back āall guns blazingā and ask why, Arenāt decisions about healthcare supposed to be taken together with the patient, what solid and medical reasons are you basing my discharge on, and ask, assertively, arenāt there new DMTs that deal with progressive features of MS and make noises about ā how do I complain about totally unexplained decisions being made about me and my treatmentā.
Exactly what I would do @Hank Dogs Itās a real cheek, mind I say that, Iām SPMS and I havenāt seen a neuro in 6 + yrs, thereās nothing for me, never has been, but like @mully, Iām progressing, just like so many on here 
Jean
Thank you all for your replies I just donāt feel I have the energy to deal with them at the moment everything is such a massive fight The reason I contacted the neurologist ( and when I found I had been discharged) was to chase up a referral to Neuro rehab that was made 3 years ago Neuro rehab had written to me in 2022 to say they had staffing issues and they would get back to me when an appointment was available I contacted them directly yesterday and sent them a copy of their letter They phoned back to say as the letter was in 2022 I would need a new referral letter and back to the beginning of the list Im in agony with muscles spasms and spasticity and my GP has exhausted the list of drugs available for him to prescribe
Donāt muck about: go straight back to your GP and get a new referral to a different NHS Trust. The one you were previously assigned to didnāt have adequate resources back in 2022 and clearly is no better now.
Hi Mully, very similar story to my own discharged by neurologist into care of MS nurse who retired 18 months later, not replaced straight away then overlooked during pandemic 2020, disappeared from the system, GP of 30 years plus retired left festering for 6 years and now declining.
I asked my new GP 3 times in the last 6 months for help but because I disappeared Iāve had to start over, Iāve only had MS since the late 80s and although the people Iāve been seeing in the last few months have been lovely Iāve got no confidence in any of them and donāt imagine any longevity in helping me to make any improvements in the future.
Last time I contacted him and had a reply was to say I had excruciating muscle spasms and spasticity and a lack of balance He said he couldnāt see a lesion that would impact my balance as the lesions have been there a long time and it has only been in the last year that it has affected my balance so he thinks it is not the MS and suggested my GP refers me to ENT to check my ears He said he said the muscles spasms and spasticity are most likely due to my bowel issues ( I have been diagnosed with neurogenic bowel) He also doesnāt think the neurogenic bowel is related to the MS as apparently bowel issues are uncommon in MS Iām just looking back at what Iāve written and itās hard to believe heās actually said these things Heās very young and is head of the department We are in a very rural part of the country and it took 3 years to recruit
Whatever the difficulties, you need to get past this guy.
There are many schools of thought about what MS is, and this guy is something of a dinosaur in his thinking. For him and his ilk, no lesions = no MS or at least no progression. The theories that have gained traction in recent years question earlier theories and the lesions and inflammation are the response to MS not the MS itself. You may have heard of smouldering MS? Promoted by Prof G (Gavin Giovannoni) and others, it explains how symptoms can be worsening yet with no evident new activity.
You need to find yourself a new consultant who buys into āsmoulderingā MS. I should know, had to switch to a new consultant (and new NHS trust) to be heard, but it took me a couple of years, not decades. Do some research of your own and see if the concepts ring true.
Graeme