My wife, Joyce, was diagnosed with relapsing MS in November 2020 and has only ever had two brain scans. The first in January 2020 and the second in October 2020, which lead to a comparison between them and confirmation of her diagnosis.
Since then she’s been on gabapentin and paracetamol to deal with symptoms. No actual treatment for her MS other than a vitamin D supplement. She gets a phone appointment with her neurologist once a year and a contact number to the local MS clinic. Last time she called them after a relapse they told her not to bother unless her symptoms stayed a lot worse.
In the last two years she’s not had any more scans and not seen anyone face to face.
Her symptoms have clearly got worse in the last 2 years. She has less energy, bumps into things more and is a lot weaker. She also gets a lot more headaches and pains in her back and legs. She frequently experiences severe vertigo. I’d say she has to go back to bed for a couple of hours every other day and every couple of weeks she has to spend a day or two in bed.
I feel like she is being ignored / neglected by the NHS and want to get them to look after her better?
All suggestions greatly appreciated.
Hi, sorry I don’t have any suggestions, except could ask her GP for physiotherapy (at home or locally) which can help with strength and balance - or Council Occupational Therapy can help with mobility aids or e.g. grab bars - but just wanted to sympathise as only get 25 minute consultation with MS consultant once a year and my MS nurse and the MS team just ignored my calls. There really doesn’t seem to be much help, certainly no ‘team around you’, not sure if it’s lack of NHS funding in general or particularly for MS, wonder if other illnesses get only 25 mins consult annually? Oh also, maybe Occupational Therapist could refer to orthotics for leg splints to help with walking, they are good…once have managed to get the things on!
If her condition is worsening, would you say that has been a steady thing or on & off? Is she still RR- or could she possibly be SP-MS now (in your non-professional opinion)? We don’t know on this forum but it’s a legitimate question to ask her MS Consultant, either directly or via the MS Nurses.
Something like “I have had a diagnosis for 2 years, have had 2 scans, the MS appears to be active, can I be put on a DMT please? What is your proposed treatment plan for me?”
If that doesn’t work, look up PALS on your NHS Trust website. No messing!
Is there a reason why she doesn’t take anything for her ms? With RRMS she would be entitled to a DMT. If that conversation hasn’t happened yet then I’d definitely be on their case as it’s important to start them as soon as possible after diagnosis for the maximum benefit.
Absolutely agree with the above - be pushy. It’s a shame it has to be this way but unfortunately if you don’t fight your corner with the nhs I think it’s easy to be overlooked/forgotten about. That really is bad if they haven’t offered any treatment so you’re well with in your rights to make a fuss!
Good luck x
Thanks for the feedback folks.
In some ways I’m glad it’s not just Joyce being fobbed off but it appears to be a poor show by the NHS for those with MS.
My wife hasn’t been offered any other treatments and we’ve no idea why. We weren’t even told there were any treatments.
I think she still has RR MS as it seems to go in fits and starts, with her feeling a bit off/ experiencing an issue and then it goes away but not always completely.
So it looks like we will have to start getting pushy. She gets on really well the our GP’s practice manager so we’re thinking about telling her how Joyce is feeling and see if she can do a bit of pushing with us.
I’m not sure if this is helpful but I was diagnosed privately after a long frustrating journey with the nhs dismissing me. My consultant then just put me onto his nhs patient list and I started treatment very quickly. If you were able to afford just a private consultation with a neurologist then it may speed things up. The drugs are only available nhs but at least it would speed up the process. Sorry if that’s not an option for you but thought I’d mention it in case x
Thanks, Joyce is seeing her GP this Thursday so we will discuss this before she goes.
Which hospital trust is your wife under? Some perform much worse than others - it can be a postcode lottery. Maybe others would know if yours is one of the poorly performing ones as far as MS is concerned, (so are generally unreactive) or indeed well performing ones (and your wife has been overlooked by mistake).