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New DX, No next steps

I have had symptoms since 2009, been really ill with it since 2011 and pretty much known it was MS for about a year and half and now after nearly 4 years of tests and being told I have one thing or another, I finally got the letter from my neurologist saying Multiple Sclerosis. I breathed a sigh of relief.

The sigh of relief didn’t last long when I realised that there were no next steps in the letter. No indication of what type I could have or what I could do to manage it. So I ordered loads of info booklets from MS Trust to educate myself and called my GP to make an appointment to ask questions. That was the moment that I found out my GP has gone on a 3 month sabbatical, any time I have seen another GP they have said they are not happy to do anything without talking to my GP, but I made an appointment with another GP anyway and went to that appointment yesterday.

This might seem like I am just venting but I do have questions, this GP said that now that I have a diagnosis, the GP surgery will not help me at all, with anything to do with MS. I asked about getting braces/supports for my joints (mainly my wrists) and she told me that they were no longer permitted to give prescriptions for those items and she spent the whole 10 minute appointment telling me she couldn’t answer questions or do anything for me. Does anyone know if any of that is true?

Even though I have quickly made peace with the diagnosis, I still feel like I’m on an uphill battle to get any help from the medical services in my area. Can anyone give me any advice as to what I should do next? All I want to do is to adjust my life accordingly now that I have my diagnosis and become at least a semi functioning member of society again.

Sorry about your dx.

It is a bit disappointing that your neurologist hasn’t offered any follow-up. If you have no appt in the diary, I should get on the phone (with luck, the neurologist’s sec’s phone number should be on the letter) and see about making one, either with the consultant neurologist or someone on his/her clinical team - maybe a doctor and maybe (better!) an MS specialist nurse. If you don’t get any joy that way, that is something that hte GP ought to be able to help you to hurry along.

GPs. They don’t come across MS very often and, unless they happen to have patients with MS already, typically don’t know an awful lot about it. It is usual for the hospital specialists to take the lead on dealing with a patient’s MS - GPs will expect them to do this. For instance, they will tend to be happier prescribing medication to help with MS symptoms that the neurologist has recommended (although it would be a poor sort of a GP who declined ot show any personal initiative whatsoever!) So yes, for MS purposes, you are under the care of the hospital specialist neurologist. But that doesn’t (or shouldn’t) mean that the GP washes his/her hands of you. As my (wonderful) GP once put it to me, ‘The neurologist is interested in your MS; I am interested in you.’ Your GP should always be your ally when navigating your way through the system.

Your priority should be to get yourself an appointment with the hospital specialists, I think. With help from your GP if you need it (not that your lot sound up to much, alas).

Good luck.

Alison

I have to agree with Alison . Your MS nurse is the one to speak to and they can organise for an appoinent with the neurologist if needed. Obviously all areas work differently but you should be able to get the number from the secretary. Disappointing to hear that your gp won’t help as they should be able to prescribe you without needing the neurologist to tell them although it isn’t their speciality. Good luck janet x

hi chrissie

well i think it is shocking that you have been told that you have a chronic condition and not even been told which kind of ms you have.

the hospital i go to for my ms appointments are very good although a bit rushed.

when i was given my diagnosis the neuro passed me on to a ms specialist consultant.

on my first appointment with him, i met my ms nurse and was given a choice of disease modifying treatments.

although i can’t fault my consultant, it was still scary to go home with a label of ms.

my neurologists always liaise with my gp.

as mentioned by your other replies - get on the phone to the secretary at the hospital you are under, ask for ms nurse’s number.

tell the nurse your problems with your primary care provider and see if he/she can get the ball rolling.

good luck

carole x

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Thank you all.

I will get on the phone to my Neurologists secretary on Monday and try and get an appointment.

If anything, all I want is for my questions to be answered and I think that is a fair request for me to make of them.

Alison, your GP sounds wonderful, as is my usual, I just wish she has been there when I had received the letter and that I had not had to see this locum, she made me feel like a bit of an unwanted outcast.

I haven’t been passed on to any kind of ms specialist, so I am kind of hoping that means my current neurologist is one, we do have an MS Therapy centre in our town, I’m not sure if I have to be referred there or not but I am going to contact them and see if I am able to get an appointment there too.

Fingers crossed I get somewhere, but thank you all for responding.

:)x

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hi chrissie

its great that you have an ms therapy centre in your town.

the support there will be amazing.

i go to one in manchester.

i get hyper barric oxygen therapy.

lots of good people to talk to and lots of coffee and cakes!

carole x

Chrissie

Sorry about your diagnosis and sad that you have not yet had the support you need.

I encourage you to contact your local Therapy Centre - you do not normally need a referral from your GP/ neurologist. As well as all sorts of useful therapies you will meet other people with MS who will be a good source of information and support. Incidentally I acquired a FES (Functional Electrical Stimulation) device from my local therapy centre which I have found much more help for my drop foot than the braces offered by Orthotics at the hospital - though not every Therapy Centre offers a FES service.

You do not say which area you live in - if you are willing to share this on the forum others here may be able to direct you to local sources of support. You should of course have been referred to an MS Nurse if there is one in your area - most of the MS Nurses I have come across are very knowledgeable and easier to get hold of than neurologists.

The way your diagnosis has been handled does not seem to be in line with the new NICE guidelines on MS - you might wish to check these out and make a complaint if you don’t have any luck with your neurologist. You can download the guidelines elsewhere on this site.

Finally if you use the Near Me feature on this website you can find the nearest MS Society Branch. Each branch has trained Support Volunteers who can signpost you to various sources of help and support you if you encounter problems. The Branch might also run a Getting to Grips with diagnosis course or have regular meetings where you can get together with others who are recently diagnosed.

Good luck in tracking down your neuro - and do let us know how you get on

Hilary xx

Hi, if you can find the secretary’s email on the neuro’s letter, I’d send an email too. My neuro’s secretary never answered the phone so I left a voicemail but she didn’t call me back. So since then I email in order to have proof that i raised a problem and when. Proved to be helpful.

All the best, xx