@mattltsmith

Last reply

mattltsmith

Normal wait time for treatment?

Hey everyone. I was diagnosed about a month ago now. I've just received an appointment for a consultation with an MS specialist neurologist (not the same neurologist I was diagnosed by) for the 7th of July, and I'm wondering if this sort of gap is normal? I assume this appointment is when we will discuss treatment, and I so far have not been put in contact with an MS nurse. They want to scan my brain before discussing treatment to, in their words, "stratify risk" for decisions around treatment (was diagnosed from a spine scan, unclear why they didn't do my brain at the time.) It's making me a little uneasy that it seems I'll be going without treatment for a few months, and I was just wondering if this is normal? I annoyingly have already researched and have kind of made up my mind that I'd like to be put on Ocrevus preferably, and I'm hoping they'll support that decision, but July seems like such a long way away to find out.

fay_mishima

@fay_mishima

I was diagnosed in 2006, but did not start meds until 2007. Those days, they preferrably waited for two relapases and a comparison scan before deciding on anything. I am ust talking about my experience, but seems lately on the forums a lot of people started their meds earlier. P.S. Video gamer enthusiast too

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sritawk

@sritawk

That sounds like a long gap, but I can only go by my own experience - I was diagnosed end of February this year and just over 2 weeks later I had my appointment with my MS Consultant and MS Nurse, where we discussed DMTs. I had essentially made my mind up about Ocrevus too, but still took another couple of weeks after to digest the information they gave me, weigh up pros and cons between that and Tecfidera. I would maybe call up to ask if there are any cancellations so you could be seen earlier, the worst they can say is no. It's not a bad thing to have researched what treatment you'd like to go on - in fact that's probably the best thing for you to have done so you can go into you appointment and try to push for the best treatment for you. If you haven't done so already, I'd highly recommend writing down your symptoms, when they came about, when (if) they disappear, the severity etc. too in a notebook. Take care, and let us know how you get on :)

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sritawk

@sritawk

I should have clarified that it won't be until June this year before I start my treatment, so 2 weeks from diagnosis to see an MS Consultant + Nurse, ~3 months from diagnosis to starting treatment.

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Shmi

@Shmi

Hey, I'm sorry your wait is so long, it seems to be the hardest bit. I'm pretty much in the same spot and only got my next appointment dates recently for an mri on the 29th (3 months after my initial scan :/) and treatment discussion on the 11th of next month. I reeeally reccommend asking to speak to an MS nurse if you haven't already, or finding a way to get in contact. That was the only way I managed to get some progress made and the one phonecall made a huge difference. Until then it was a lot of trying to ask questions to secretaries and not much movement. It was just good to talk to someone who could take some action and who I could express some of my worries to. Still have a wait but just chugging vitamins and absorbing sunlight in the meantime :D hope you are taking care!

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Luv_Ma_Name

@Luv_Ma_Name

I had to wait from April to July to see an ms specialist then started DMD'S in the sept. It's a worrying time and it's a whole new language and conversation but I have never experienced anything happening quickly since I've been diagnosed. I've kind of realised that if nobody else is panicking or worrying then why should I. Easy to say but very frustrating. Best wishes x

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mattltsmith

@mattltsmith

@sritawk the Scottish NHS is usually a lot better and faster than south of the boarder I think. God, get me out of Toryland :( good luck with starting treatment! Have popped them an email today (couldn't get ahold of them on the phone) and hopefully they help me out.

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mattltsmith

@mattltsmith

@Shmi have popped them an email (couldn't get them on the phone, but they've answered my emails before) and asked about the status of the MRI, what the consultant appointment is regarding and if I can be put in contact with an MS Nurse in the meantime :)

mattltsmith

@mattltsmith

Things may have been slowed down because they accidentally forgot to send me blood test forms, and sent them 3 weeks after they were meant to arrive. They may want those results before moving forward. Incredibly frustrating if so.

Vixen

@Vixen

Hi @mattlsmith, also don't forget that Covid has affected most outpatients at the moment, not to forget that the procedures tend to vary between postcodes/areas. You're doing he right thing in researching treatments though; most people get diagnosed then go into a spin once they have to decide about DMTs so you're ahead of the game which is great. Think of a substitute though, as Ocrevus might not be suitable for everyone. Good luck with everything!

Julie01

@Julie01

If we could go back to day of diagnosis , things I’d change straight away is healthy eating and regular muscle exercises to keep muscles going strong

mattltsmith

@mattltsmith

I got an email back from a secretary today saying the appointment in July is "to get to know me before deciding what treatment" and they've forwarded my email to the MS nurses to see if they "need to talk" to me. I hope they get in contact, otherwise I'm very unhappy with that. 5 months from my relapse to see a consultant, 4 months after diagnosis, seems really wrong to me, and who knows how long to actually get on treatment. Not really sure what to do now :(

1

mryhrt

@mryhrt

Hi Matt! Hope you're doing okay. I was also recently diagnosed, and I met with my MS nurse last week after my last brain MRI. They're waiting for results of a blood test to come back before we decide which treatment I'll be put on, but I was told that I would have to wait until after my second vaccine to start it, which will be in June (or July once it fully kicks in). Looks like we're kind of in the same boat. I thought the wait was a bit long, too. I'm sorry it's taking so long, I know how frustrating it is. I hope they can put you in contact with an MS nurse in the meantime, at least.

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Henrietta

@Henrietta

@mattlsmith in my case, in London, it took a year from start to finish: initial GP visit with symptoms August 2019; general neuro at the National Dec 2019; tests (CT, PET, MRI with contrast & lumbar puncture) Jan - Jun 2020; referral to MS clinic June 5 2020 and finally phone appointment with my MS consultant with confirmation of dx July 24 2020. Started DMD end Sept 2020. If you want to chat to an MS nurse while waiting I can highly recommend calling the MS Society - they have MS nurses and are really helpful. If you really feel that your neuro team aren’t being fast enough you could contact PALS at your hospital and see if they can speed things up. Good luck

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mattltsmith

@mattltsmith

I think I'm going to ring the MS Society and ask for some advice because the email actually says it's not an appointment to discuss treatment, but an appointment to "get to know me" before even weighing up treatment decisions. I've read the MS brain health: Time matters report that the MS Trust links to, and the timeline they have me on seems to go against a lot of it's advice :(. If I knew for sure that they were going to put me on treatment in July I'd be more relaxed, but it seems like they may not even get me there until much later, and I dread to think of the damage my MS is doing in the meantime. Hopefully they hurry up and do my brain scan (I still haven't had one 2 months after my attack) and that'll give us an idea what's happening. They diagnosed me based on two spine lesions + previous optic neuritis from five years ago. I suppose in the grand scheme of things what's three more months on top of five years since my first attack? But I just want to get treated ASAP so I can have that peace of mind that everything that can be done is being done

Clary

@Clary

Waiting is frustrating especially when living with MS. I found that because of covid waiting times were really long. I waited from July to January. I had a couple of cancellations, due to covid 😢. However my neurologist got me a nurse appointment for in between. It seems a long time for you to wait when you have a diagnosis??? As you are diagnosed I would of thought treatment would come quick. I think seeking some help would be a good idea. I hope you can get somewhere. Good luck. Sometimes, I wish I could have more control of my treatment instead of others!!!!

1

BULLMAN

@BULLMAN

@mattltsmith I am 18 years dx. If you have a mortgage see if you have critical illness cover. You may be able to claim. Look at PIP. You may be eligible. If you work look at Access to work through your jobCentre. If not now maybe in the future.

mattltsmith

@mattltsmith

They'd forgotten to refer me to the MS nurse irritatingly, she contacted me today and was really lovely. Unfortunately, she explained to me that the wait list to get treatment in Southampton is really long so the soonest I can see a consultant is definitely July. I'm quite upset, but there's nothing I can really do except wait.

1

freyjafodder

@freyjafodder

I paid for a brain scan with contrast because they said it was going to be 12 weeks for an NHS appointment. Seems to take forever. I’m 5 weeks after diagnosis and still waiting for medication. Madness

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freyjafodder

@freyjafodder

I’m in Southampton, phone the neurology department every week for a last minute appointment. You never know, you may be lucky 🙂

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mattltsmith

@mattltsmith

@freyafodder It's incredibly frustrating because they literally had me in an MRI a few weeks ago and I don't understand why they didn't just scan my brain when they scanned my spine. I'm presently a month post diagnosis and they haven't even offered me treatment. They've said I won't be offered treatment until after my appointment in July :(

freyjafodder

@freyjafodder

It is frustrating. Tried phoning the MS coordinator today for my meds but got an answerphone. Hope you get there sooner than July

802strong

@802strong

In the NHS it seems to depend on your area: I waited over 9 months for the 1st nuero clinic despite having classic MS indicators + family history (I know someone who is still waiting for treatment 3 years on) I was diagnosed without an MRI at all, then had an MRI to confirm, told I'd start meds, which went to panel and then required a lumbar puncture. They lost the sample before screening for oliglocal bands, and this delayed treatment for over 6 months (with repetitive conversations along the lines of "we need your result" + "you lost my result" on repeat) Finally, I asked my GP to refer me to another neuro clinic in a different authority and treatment was very swift. I used to be at a main centre in a large city but found although they were considered elite, everyone and their uncle was referred there and so they couldn't meet patients need. Also, I specifically asked to be referred to a service with a prescriber so that I wouldn't have the whole panel issue again and he started me on Tecfidera within a week. With the pandemic, waiting lists have gotten much worse. I lost sensation in 1 leg for 3 weeks in May 2020 - my MS nurse from the old service told me not to call until I lost the use of both legs for 4 days (hence my GPs willingness to do a re-referral to another clinic she actually called the Neuro herself) My MS is much more manageable now. Persevere

mattltsmith

@mattltsmith

They moved my appointment up by a month to June after I raised my concerns, which is honestly such a relief 😊

1

Criscross21

@Criscross21

That sounds more reasonable. I was diagnosed in 2004 and recall getting put on Copaxone within just a couple weeks of the MRI. Sometimes I do think you really have to push or fight for what you think you need, depending on your symptoms or desire for a more urgent response.

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DominicS

@DominicS

Personally, I'd be kicking up a stink. If it were them they'd be on it a damn sight quicker. As ever, the squeaky wheel gets the oil. FWIW

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Skits

@Skits

Yes I had a bit of a delay from diagnosis 2 treatment. That was 8yrs ago now. I have brain scans ever since 2s a year. They are MRI scans that I get. The don t hurt & it's to see what the ms is up to & if your treatments working.

mattltsmith

@mattltsmith

@Crisscross21 I think it has a lot to do with the fact I was diagnosed from a spine MRI alone + previous optic neuritis, and they seem to use brain volume to help decide treatment. I irritatingly know what I want from treatment already, so I really just want that discussion, but it will be good to have the info of what's happening in my brain. Last scan from two years ago showed no lesions at all and nothing alarming, so fingers crossed nothing's changed I suppose. I've yet to really experience fatigue, so that bodes well hopefully.