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Length of wait for MS nurse?

Hi,

I know I should have learned patience by now! I was diagnosed with RRMS on 24th October and the Neurologist said

“We will get you an appointment with the MS Nurse and started on DMD’s straight away and I will see you again in 6 months. Now whilst you are waiting for your appointment arm yourself with as much info on the various DMD’s so that you can make an informed choice”

“How long will I wait for an MS appointment?” I asked

“Not long” was his reply

I was stunned to get a letter through the post only two days later from him however it was arranging my appointment with him in May 2018! I have not received confirmation of my diagnosis (that I asked for) or an appointment with the MS nurse. I was just wondering how long these things took for those who have gone before?

I am trying to be patient but I feel like I am in a new type of limbo now.I have a diagnosis but no meds, no written confirmation or MS nurse. It all feels a little surreal, the consultation with my neurologist is fading from my mind and if my Husband hadn’t been with me I might have convinced myself that I had imagined it or got the wrong end of the stick!

I know be patient I hear you say! x

Hi Belle69

I was diagnosed on the 5th Oct , i had a letter the following week and saw my ms nurse fri just gone .

I did speak to her about time delay in some parts of the country , she agreed but said its numbers of nurses against patients in some areas.

I did ask her when id start my treatment and she said there would be a letter in the post asking me to come back in .

I know this is of no help to you , but Christmas is just round the corner too , so id factor that in too , i know i have .

Best Wishes Iain .

Thanks Iain,

to be honest I had my Neurologist appointment only 2 weeks after he got my lumbar puncture results (I had in my head that it would be nearly Christmas before I saw him) so I am already ahead of the game I suppose! I just want to get on with it if that makes sense?

Have you decided on which DMD you are going to go for and did you find your MS nurse appointment helpful?

Yes Christmas when the whole country grinds to a halt for 2 weeks eh? Maybe we will get some DMD’s as a late Christmas pressie…makes a change from DVD’s !

Take Care

Hi Belle .

I was given an appointment with the ms nurse before i got my letter saying i had ms lol . My nurse was great but were undecided on either going into hospital for five days and taking the Lemtrada , she wants to speak to the neuro this week coming to see just how far the damage has gone and if its worth the risk . If thats a no them im going on Tecfidera .

I guess it will be early Jan before i start . Im in the army so my medical officer is looking after me at the moment hes great i see him every week and hes got me on Gabapentin ( 300mg ) 12 tablets a day which has calmed things down a bit , so im luckyand havent been left swinging in the wind .

Best Wishes Iain .

After my Dx I had nothing and feeling a bit lost and confused I came on here. A very kind member on here told me I should have an MS nurse and after a few private messages they gave me the name and number for the MS in my area.

I rang the MS nurse and about 14 days later I had my first appointment with her.

Since all that I have had cause to ring my MS nurse a few times and every time I have to leave a message on the answer machine and await a call back. My call backs have been at a minimum 4 days and at a maximum 11 days. They are very overworked.

I would suggest you may want to try and make contact with your MS nurse yourself. Some one should be able to give you a contact number for your area and you should be able to leave a message for a call back.

Belle

Try phoning your neurologists secretary. You can ask him/her how long a letter is likely to take, also for the contact details for your MS nurse so you can get the ball rolling on DMDs.

With my neurologist, generally the letter is a copy of the one sent to my GP. It has the date dictated and the date typed at the top of the letter. There can be several weeks between the two dates. And at the bottom, ‘sent unsigned to avoid delay’! Which if it’s 6 weeks after the appointment is laughable.

So I wouldn’t say ‘be patient’ at all, I’d say that sometimes the medical professionals need a bit of a nudge (or a kick up the a*se).

Sue

Hi, I’m sorry you feel like you’re still stuck in limbo - it’s certainly frustrating. It does seem to be a bit of a lottery when it comes to everything related to MS. I was diagnosed with CIS in July and has an MS nurse appointment in Sept. While there I was given contact details etc and told if I thought I was having a relapse to give them a call and they would usually be able to see me within a couple of days - from reading through these forums it certainly seems as though other areas aren’t as well staffed! Certainly give them a nudge though!

Thanks Cheetah and Sue,

I will give it until Wednesday when I am off and if I have not heard by then I will ring the Neuro’s secretary x

Dear Belle, i agree…waiting is awful.

I was diagnosed in June and have only just had my lumbar puncture. My private neurologist diagnosed me without a lumbar puncture but I can’t afford to stay private and the NHS neurologist said that I have to have an LP to confirm the private diagnosis. Although he too has written to my GP and noted, that I have remitting relapsing and has given me a course of steroids.

The waiting is horrid. I have no services in county (shropshire, they are not accepting new referrals) and so I am using out of county hospitals. As a result I have been told that there are no available MS nurses either?

I am presuming that if I do not hear anything, I will phone the neurologist’s secretary. My GP said that he will also chase things up, he said to give two weeks for the LP results to be made.

I am worried that things take an age, because I would like to have treatment asap.

My biggest hope is that following a new health regime. Exercise, diet and meditation, I may be doing some good myself (Overcoming ms dr George jenelik)

Try to gather friends around you, try to stay positive, try to keep healthy and keep phoning the services, in the hope that things speed up.

kindest thoughts

Ali

Patience is a good thing but sometimes i think a little less of it is good? No harm in chasing people up after a little while? My wife was pretty much diagnosed in late july(as we understood at the time),then we had another appt early september and found out the previous neuro had left and this appt to find that out and the mri scan had still not been viewed so still not 100% diagnosed seemed a total waste of time! They viewed scan few days later and letter to gp said the ms specialist agreed to see wife .2 months to the day later and having been very patient i got her to call hospital and she found out that the Dr we had seen had forgotten to put it through so were not in system!! wish we had been pestering them for appt much sooner!

Oh dear that is awful. You think that you are doing the right thing by not pestering and letting things run their course only to find out that nothing has been done! I do hope that things are back on track for your wife now. as if this waiting game isn’t stressful enough without the professionals making it worse!

Well I finally got through to my neurologists secretary on Tuesday.She said that their had been a delay in the typing pool but that I could contact the MS nurses direct and gave me their telephone number. I phoned on Tuesday and left a message for them to call me back,which they did yesterday but I was in the hairdressers so missed it. Anyhow I have spoken to the receptionist and it seems they were awaiting contact for me to make an appointment so a good job I rang! They are fully booked up everywhere, with my area being booked up until spring! So I have an appointment in another area (only a 20 minute drive, but as I don’t drive I will have to rely on my husband being available to take me or go on 3 different buses! So I hope I can transfer to somewhere more convenient at some point!) My appointment is on 11th December.

Hi Belle .

Where abouts in the country are you ? Im in Cumbria but being treated in Northumbria at the RVI Newcastle . That is where i spent time in Hospital , and was diagnosed , and thats where my nurse is ,so its all under one roof which is great for me .

Ive come to the conclusion that the secretaries are the reason for the hold ups , in not pushing the letters out once you have a dx .

At the start of my journey i had an mri scan and got the letter of result nearly 3 months later saying cis and TM . The funny thing is a neuro saw me the previous week and gave me a dx of ms , dont get me wrong the Hospital and treatment is superb ,i think the after care leads a bit to be desired though , and i told my nurse this and dhe laughed and agreed and said it was their bug bare too .

I hope you get into the right system of care and are not sent from pillar to post .

Best Wishes Iain .

I am also in the North Iain. I live a few miles from Blackpool. My Neurologist is in Preston where they apparently have quite a few MS nurses however they are booked up until new year (If I wanted an appointment in Blackpool I would need to wait until Mach!) My appointment is in Lytham which will be fine when hubby can take me. I just want to get on with this, so to speak so to be honest if they had said my appointment was on Mars I’d have taken it haha, My theory is once I get my DMD’s sorted I can then afford to be choosy with my appointment location! Also I am very lucky that there are several places ‘relatively’ locally that I can go to!

Dear All,

The waiting is so frustrating. And I do hope that all of us get the services that we so desperately need.

Following my lumbar puncture I waited the two weeks as advised before phoning the neurologist’s secretary (yesterday), sadly to be told that there is an eight week wait after the lumbar puncture (we are not sure why? Me and the secretary!). Furthermore, my neurologist has left the hospital (returned to Europe sadly), and I promise that I am not joking as I write this…there is a new neurologist arriving within the next few weeks called Dr. Mystery!

With so many symptoms (mild-ish but many), I am signed of off work and luckily am able to get six months of sick pay. The things that keeps me going are (in no particular order) exercise (never really done it before!), looking after my diet, friends, family and of course, this forum. Oh…and movicol!

Haven’t yet managed to learn meditation but will try because stress is definitely a trigger and I have heard that it is good.

kindest thoughts Ali

Hi Belle This is my first post on here, but after reading your post it spurred me on to comment. What you wrote, is almost exactly my experience. After the limbo of all the tests and uncertainty for 18months I honestly thought that I would be out of limbo. How wrong could I be! I too began to think that I must have imagined what he told me. I was told that I has ms end of sept 17, after initially CIS, then possible ms, then probable ms, then by the way you have ms! Still no MS Nurse appointment,did phone up but they haven’t got me in the system, I’m guessing that’s because the letter and referrals haven’t been issued. Secretary can’t do anything yet as waiting for notes from neurologists. Even Dvla asking me to chase up consultant to return their form (is this normal?). I’ve found great comfort and advice on this forum since my journey began. At least you feel that you are not alone and I do find consolation reading other peoples posts. Incidentally I’ve thought I’m definitely having to get more patience- but seriously it’s so frustrating.

Hi Chatterbox,

I think I would go mad if I didn’t have this forum. I am not a prolific poster, I often search old posts and find the info that way.I can’t recommend it too highly! There are so many people wanting to help and share their experience. There is so much knowledge and info here from people who have lived and are living with this. I hope as my knowledge grows I can help others too.

My husband keeps teasing me and asking “Are you talking with your new friends again?” Well if the definition of a friend is someone who helps you for no personal gain,just because they can, then I believe we are indeed amongst friends.

Take care and I hope you get some progress soon x

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When I was first diagnosed I was told by the neurologist’s secretary that there was a three week wait for my neurologist’s referral letter to be typed…I answered by saying that if she gave me an hour to grab my shoes and coat and drive over, I would type my letter and any other six to help her out. Two days later my MRI appointment letter arrived. Weird but true. Very best wishes to all who are waiting. Ali

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Hi Belle

Bit of a turn up, when I said in my earlier post you should get onto them little did I know we are likely seeing the same ones. I am also at Preston or is it Blackpool, or is it Fleetwood…they never seem to know and I keep getting appointments for many different places.

They always seem to set me up with Preston as a default but after some calls and complaining I can usually get it moved to nearer Blackpool, much more convenient.

We have the daily living centre in Blackpool who run a number of clinics that I have been referred to along with Blackpool Vic for other things as well as seeing my specialist there in his occasional clinics.

The Nurses are based in Preston but a call and leaving a message usually elicits a call back and an appointment at a convenient location as necessary. Travelling to Preston can be a bit of a pain at times.

Good luck with it all and glad you’ve now got into the system.

Thanks Cheetah, small world eh?

What is the daily living centre in Blackpool? Is it the place on Whitegate Drive?

So far I have had appointments at Spire (first appointment was private) then Preston ;MRI at Chorley; back to Preston for my Lumbar puncture and then Preston and now Lytham. I have had some lovely days out ha ha! x