Last reply 1 day ago
I’m back

Doubt anyone remembers me but I’ve posted on here since 2016. Long story short but got CIS diagnosis in January 2017 and started on Rebif until December. Taken off due to low wbc meaning I couldn’t have elective surgery. Plan then was for 6 monthly mri/appointments and close monitoring. My case has been now discussed twice at a local MDT meeting. I thought my scans had been stable so wasn’t expecting much in the latest letter. However, I’ve come home to a letter saying they’ve noted a subtle change in my cervical spine so I now meet the criteria for relapsing remitting ms. Although I’d been expecting this at some point, I’m a bit floored by the letter. My neurologist is planning to see me but I don’t yet have an appointment. I’m unsure if I’ll be offered any treatment as don’t think I’m classed as active ms but can’t have interferons due to previous history.

I’m not sure why I’ve posted but think I’ll need to access everyone’s support again please. My symptoms are mainly altered sensation arms/legs at night and sometimes during the day. I’m unsure what I’m meant to report as not sure what’s usual for me now anyway.

Sorry to ramble ☹️

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vixen
1 week ago

Hello @smurf69. Well at least you’ve had a while to think about the ‘porspect’ of MS, RRMS to be specific. It must have been a shock. Have you always had altered sensations since 2016? Have they ever gone away? My understanding is that you don’t have to have active MS to start on DMTs.

I’ve had altered sensations since 2016. It’s not painful so I feel I can’t complain. But I’m so BORED of it now. I think it’s coming to terms with the fact that the spectre of MS just isn’t going away which is tough to embrace.

Anyways, you’re in good company, it’s great that you see Shift as being supportive. I mean, the good thing is that at least you are under the monitoring radar. Take care, keep posting! X


smurf69
1 week ago

Hi @vixen, thanks for your reply.
Symptoms haven’t really gone I don’t think but I’ve just got used to them. I occasionally get other altered sensation but they come and go so I don’t report them (not sure if that’s right or not though).
I don’t think they should send that info in a letter if I’m honest though. They probably thought I was half expecting it but wasn’t expecting it now as she’d said my mri was stable. They’ve now said they can see subtle changes on my cervical spine which have been there since earlier scans but are only being acknowledged in retrospect.
I remember before that my neurologist said you aren’t always eligible for DMTs if not active ms. Not sure what I’d prefer at present as still bit shellshocked.


lightning87
1 week ago

Welcome officially to the club, there could be worse clubs I suppose 😉 Stay positive, life goes on and we all have the fight in us.
At the end of the day, who knows what is round the corner. Even the healthiest of people could jog in front of a bus. Don’t look too far into the future is my advice (sometimes I have to remind myself of this too!!).
I think you would qualify for DMTs and there are a number to chose from so sure your neuro/nurse will be able to advise best course of treatment for you.
I have altered sensations too, it started with a numb hand (hasn’t gone away completely), l’hermittes (that’s gone) but recently had tingling in my lower back/legs/feet which seems to happen when I’m tired, sitting too long or walking too long. It doesn’t affect my ability to walk but it is annoying.
Write all the questions down that come to mind so you are prepared for your neuro appointment.
We are all here for you, anytime x


smurf69
1 week ago

Thanks @lightning87, do you report any new symptoms? I don’t as they don’t last but then sometimes come back.
I get numb arms/legs overnight or strange sensations. Think I occasionally get L’hermittes but not all the time. My legs get buzzy if I walk too far too.
Are you on any treatment? How long have you been diagnosed?
Sorry for all the questions 😳


grandma
1 week ago

@smurf69 ramble all you want mate we’re here to listen and promise not to get bored. I’m one of the old codgers, dxd 25 years ago, no dmt’s available but a year later the first went on trial. Was part of the trial for Beta-Inferon, was on it for 23 years, rrms, which they told me would become spms in 10-15 years, it took 23 so not complaining. Been on Tecfidera since the start of this year yet there is now so much choice with dmt’s that you are likely to have a problem choosing from those offered to you. Don’t worry about it, stress is one if the worst things with ms. These days dmt’s are good, they are all meant to slow the progression of the disease, and now it has been confirmed, anything you can do to slow things down will help. As @lightning87 says, write everything down as it occurs, you will not remember when you’re in the consulting room, and remember, with ms, there’s no such thing as a silly question. Good luck😅😏😍


smurf69
1 week ago

Thanks @grandma, I’m worried that I won’t be eligible for any DMTs as, when I saw my neurologist earlier this year she said I might not be eligible if diagnosed with ms that was inactive. Seems odd to me that CIS makes you eligible for first line treatments but inactive ms doesn’t. My ms Nurse did say they might be able to make me eligible saying I failed on Rebif. I don’t really want the dude effects but don’t want more symptoms.
I’m not really sure what to ask just yet as will probably wait to hear what she says. My nurse is good and replies to emails quickly.
I’m still unsure what symptoms I should report though. I’ll maybe ask that.


stumbler
1 week ago

I remember you, @smurf69 .

A diagnosis, even if you’re expecting it, is still a shock, so it’s wise to share and get it off your chest.

There’s obviously been some progression, so that makes it active in my book, so it would be worthwhile to research the Disease Modifying Therapies (DMTs).


smurf69
1 week ago

Hi @stumbler, bet you remember everyone and you are such a good source of support.
Her letter says that this is the first time this subtle change has been reported but when they look back they can see it on earlier scans. She had written to say my scan was static though.
I’ve had no actual relapse that I know of but am unsure if these odd symptoms count or not.


stumbler
1 week ago

@smurf69 , well, I think you need a definitive report on the scan, is it unchanged or not.

It’s unprofessional to give you two contradictory views.


smurf69
1 week ago

I’ve had several MRIs since August 2016 which have all be reported by a radiologist as non-specific white matter changes. However, my neurologist has always pointed out lesions that she thinks points to MS. She decided after my scan in April to discuss it at an MDT meeting. The neuroradiologist only identified 1 suspicious lesion so with my positive oligoclonal bands kept me as CIS. My neurologist wrote to say that my recent scan in October was static but she wanted to discuss my case again at the MDT meeting. This resulted in today’s letter about the subtle change in my spine that has been reported on my recent scan which when they look back at earlier scans they can now see.
I will definitely query this with her though.


regj
1 week ago

@smurf69 I think this forum is a great place to come when you’re feeling unsure, I hope our comments can help. With regards to keeping track of symptoms, I used to just write a little note in my phone every time I experienced anything that might be MS related and then before my appt would draw up a quick timeline. Now I use an app to do the same thing with less of the work. Some of the symptoms I reported turned out not to be directly related to my MS but I still got support and advice when I mentioned them, so I would say its worth mentioning everything. There’s no harm in it. Hope you get the answers to your questions soon


smurf69
1 week ago

Thanks @regi, didn’t sleep that well last night.
Can’t help worrying about the future. It’s easy to say not to worry but all I keep hearing is that I’ve got ms and don’t think it should’ve been diagnosed via letter. I’m going to call the secs today re app.
It’s really helpful to post here. Putting on a brave face with family as they’ve all got their own issues. My husband tries to be supportive but he can come across as dismissive – he says not to worry about the future and we will deal with whatever as it happens.
Was anyone else given the news via letter? As I said before, if she hadn’t written to say mri static I might have been half expecting it.


stumbler
1 week ago

@smurf69 , your husband has the right attitude. Don’t spend your life worrying about things that may not happen. No-one knows what tomorrow will bring.

CIS or MS, you’re still the same today as you were yesterday, so try and keep things in perspective. 😉


smurf69
1 week ago

Thanks @stumbler, I have tried not to dwell on things over the past 2 years and kept this fairly well boxed up living my life. It’s really hard to explain though as I don’t look as if there’s anything wrong with me which is fantastic but I sort of want to shout out that there is something wrong with me just because it’s not visible to people. There’s only a handful of close family/friends who know plus my line manager at work. I think I’d rather keep it that way as don’t want sympathy or pity and want to be treated the same as before.

I’m not sure any of this makes sense but it seems like everyone else’s world is carrying on and mine has just paused for a bit (not stopped tho).

I can’t help being cross that I’ve been told via letter too and don’t yet have an appointment. As I’ve said before, if she’d not said my latest scan was static, I might’ve been more prepared. I’ve emailed my nurse but she’s away til next week so I’ve left message for the secretary to call me about my appointment.


vixen
1 week ago

Hi again @smurf69, I am increasingly angry when I hear about diagnosis by letter, you’re not the first one to report this happening on Shift. I know, it’s easy for others to tell you not to worry. I’ve often posted by own rip for dealing with anxiety…..when I was going through this awful period, I would allow myself 25 minutes a day of anxiety, fear, panic and self-induced stress. After that, I would have to suck it up and put it away for the day. If a worry came into my head, I would write it on the list for the anxiety session the following day. I came to really adapt to this and guess what – one day I discovered I hadn’t even had my allotted time, and so I knew I was processing things better. Try it! X


stumbler
1 week ago

@smurf69 , it’s not easy, living with an invisible condition. So, do we tell or not? It seems we’re damned if we do and damned if we don’t, so you do what is most comfortable for you.

As far as the contradictory scan results are concerned, you need to get your Neuro’s view. They’re the ones whose interpretation is important.

Hope you get some satisfactory answers soon.


smurf69
1 week ago

Thanks both @vixen and @stumbler, I think once I get an appointment, some answers and a plan I’ll probably be ok again. Just a bit shellshocked at present to be honest. I think I’ll still keep it to a few close people for now until I have to say anything more. I’ve asked to be referred to Occ Health as want it acknowledged as such.


rivka
1 week ago

@smurf69, I want to add that I had very low WBC on rebif 44, my neuro waited 2 months and restarted me on 22 and I’ve been stable (with WBC at least) every since. So maybe rebif at a lower dose is still an option?


smurf69
1 week ago

Thanks @rivka, when I first got a CIS diagnosis, I was offfered the interferons and copaxone. However, now copaxone isn’t an option. I recall her saying before that an MS diagnosis wouldn’t necessarily make me eligible for any DMTs unless I was classed as active MS.
How are you with side effects on 22?


rivka
1 week ago

@smurf69, I have to dose myself with ibprofen one hour before to keep the body aches under control. Other than that, the rebif has been tolerable. I don’t know if my extreme fatigue is the MS or the rebif. It’s likely both.


smurf69
1 week ago

@rivka, that was me last year. Didn’t realise how rough it made me feel until I was off it. But guess it’s a price worth paying if it prevents further damage. In my email to the nurse I’ve asked what, if any, treatment options will be offered.


rivka
1 week ago

,@smurf69, I had my annual MRI today and see the neuro in two weeks. (Here only the neurologists treat MS, not nurses) I have gone around and around inside my head debating that very issue; stick with a med that may be making me really tired, but stabilizing the disease, or take something else different/stronger/better and risk different maybe worse side effects??
Please let us all know what your next step will be and good luck.


smurf69
1 week ago

@rivka, have you been offered anything else? Are you stable on Rebif? It’s good you’re seeing neurologist so soon. How often do you have MRIs?


rivka
1 week ago

@smurf69, I was diagnosed 2 months before I moved from USA to Israel, which was 3 years ago. I was in shock for awhile and just took the first med offered (while still in the states) so far, fairly stable and tolerating it, so I wasn’t looking for a change. Lately I feel weaker, more fatigued, less balance, more head fog, everyone here knows these vague complaints that are so frustrating. My neurologist gives me a MRI every 9-12 months. So I just had my already scheduled one and I’ll see her. For a change, I have a long list of questions, which all boils down to; stay on a weaker med, rebif, that I tolerate, or go for more with more side effects? I finally am also about to join a support group here, I avoided that, too, for awhile. I’m tired of pretending nothing is wrong. 🙄


smurf69
1 week ago

@rivka, sounds like a good idea to join a support group. You seem to have a good list of questions too. Let us know how you get on.


lightning87
1 week ago

@smurf69 I was diagnosed in June so 6 months ago. You sound so much like me, I have only told people close to me as don’t want the ‘oh I’m sorry’, ‘I knew someone with MS…’ or people treating me differently.

I don’t report everything otherwise I’d be on the phone constant 😂 mines is like yours, it comes and goes but nothing consistent enough to report.

My recent MRI was stable but I’ve had tingling since the MRI so who knows. I’ve been on Tecfidera since end of September, no issues apart from very occasional flush.

X


lightning87
1 week ago

@smurf69 and I was informed via a letter I never received!! It came after the appointment in which I was informed I could have MS followed by, oh did you not get the letter yet?

I was informed by letter that I had new inflammation to confirm the MS diagnosis. I don’t know if it was good to know before or not. I broke down following my CIS diagnosis in the neuro’s room as it was unexpected but my official diagnosis appointment following the next letter was expected and therefore I could make a joke or two about it not feeling as off guard.


smurf69
1 week ago

@lightning87 I think I might’ve been half expecting it if she’d not written to say last scan was static. I don’t think I’ll be eligible for treatment as no obvious relapse in 2 years plus scan changes have now been noted in the scans from 2 years ago. How much change do you have on your MRIs? How long have you had symptoms?


lightning87
1 week ago

@smurf69 what does it mean by static? You surely must be able to be offered some form of DMT if there has been changes to indicate MS you’d think. I had a lesion on my upper spine (which caused the l’hermittes’ and about 3 on my brain. They said CIS for now until they could see whether there was any further progression. Had a scan 3 months later and there were no significant changes but a new lesion so diagnosed with RRMS. My symptoms have mostly been sensory. My fingers on my hand are still numbish – I can feel it though so it’s not proper numb just a weird feeling, l’hermittes has gone but last few months I get tingling in my lower body. Apart from that I’m okay!


lightning87
1 week ago

Oh sorry and had them since early last year but not diagnosed until this year x


smurf69
1 week ago

@lightning87 I took static to mean no change. That’s what she’s written before about my scans when I’ve still been CIS. She discussed my case after my scan in April and, although she’s always thought there were several suspicious lesions, it only was reported as non-specific white matter lesions by the radiologist. The MDT meeting only felt that one was suspicious of MS. Now its been reported that my scan in October has subtle changes at my cervical spine which when reviewed by the MDT meeting can be appreciated in earlier scans. I think she’ll say that it’s not really a change as such as it’s been there in earlier scans but not reported. I’ve been seeing her every 6 months this year and last year on Rebif seeing the MS nurse every 3 months.
How often do you have scans/see neurologist or nurse?


smurf69
1 week ago

I called the neurology secretary and explained how unhappy I was to be diagnosed via letter especially given that the neurologist had written to say my latest scan was static I wasn’t due to see the neurologist until Feb but I said I couldn’t just wait until then to know if this is a definite diagnosis. She was very nice and said she would speak to the neurologist and let me know plan. She did say that it might be because I’d see the nurse to discuss treatment options.

Thing is now I’m not sure if I’ve been diagnosed or not. I’ve re-read the letter several times and it says “supports the diagnosis or relapsing remitting ms”. Does this sound like I’m definitely diagnosed?


stumbler
1 week ago

@smurf69 , to suggest that something “supports the diagnosis or relapsing remitting ms” implies that a formal diagnosis has already been made. If it had said “may support…..”, then I would have suggested that a diagnosis was still being considered.

It will be interesting to see what the secretary comes back and says. It may suggest that someone needs to resit their GCSE English. 😉


smurf69
1 week ago

Sorry @stumbler partly my bad. It should’ve read “suppports the diagnosis of relapsing remitting ms” not or.
Tbh though, and I said as much to the secretary (who didn’t write the letter), the quality of the letter was poor.


stumbler
1 week ago

@smurf69 , I’d spotted the typo and read it as “of”. 😉


smurf69
1 week ago

Thanks @stumbler, they’ve always classified me as CIS before this letter. Even when I was discussed earlier this year at the MDT meeting, the neuroradiologist only identified one possible suspicious lesion whereas my neurologist thought there were more including this change on my spine.


smurf69
1 week ago

From reading the letter, the subtle change on my cervical spine that has been noted on my recent scan is “a very subtle area of T2 signal change at cervical 2 level. Looking retrospectively the subtle finding can be appreciated on the MRI scan dated …” (and lists previous MRIs back to my original scan). It goes on to say “However, this is the first time it has been officially reported by the radiologist” Don’t know if you can make head or tail of that?

i can recall that at an earlier appointment my neurologist said that I might not be eligible for treatment even with an MS diagnosis as might not be considered active. I do have odd symptoms of altered sensation but they come and go so I’ve not reported them. My initial symptoms were throbbing/numb arms and altered sensation in lower legs – both overnight. I still do have this but have got used to it.

‘Do you think I should push for DMTs? I’m hoping that the sec will call tomorrow having spoken to the neuro about an appointment. My nurse is back from leave on Tuesday and is usually pretty good at replying quickly.


stumbler
1 week ago

Be patient, @smurf69, and stop trying to second guess what might be said to you. 😉


smurf69
1 week ago

@stumbler, I’m trying hard not to and mainly am just carrying on as normal. I just can’t help being cross at being sent this letter and then nothing. What do they expect me to do with this information or, should I say, lack of information? 🙄


stumbler
6 days ago

@smurf69 , hang in there………..


smurf69
6 days ago

@stumbler, thanks – I am trying hard to do that as don’t have any other option. Thanks for listening 😊


smurf69
4 days ago

Just an update.
I’ve got an appointment tomorrow so hopefully will get some answers then.

I’ll tell her about the 3 day episode of numb lower back, groin and lips last month. Plus the fact that the distance I can walk without my legs buzzing has reduced.

I’d not reported these as the 3 day episode was Friday to Sunday and was planning on calling the MS nurse if no better by Monday. Plus wasn’t sure if it was significant especially if my scan was ok.


stumbler
4 days ago

@smurf69 , it’s good that you have an early appointment.

Make a list of all the points you want to raise. Then tick them off as you go. It’s the only way to ensure that you mention everything. 😉


smurf69
4 days ago

Thanks @stumbler, do you think I should mention odd sensations?


stumbler
4 days ago

@smurf69 , best to provide too much information, rather than not enough. 😉


smurf69
4 days ago

That’s what I was thinking @stumbler. I haven’t before as tbh I’m unsure what’s important to mention. I do get things that come and go so just think it can’t be important.


stumbler
4 days ago

@smurf69 , leave it to the Neuro/MS Nurse to decide what is and isn’t important.


smurf69
4 days ago

I guess that’s a good plan @stumbler


smurf69
2 days ago

As I suspected from her letter, my neurologist confirmed that I now meet the amended criteria for relapsing remitting multiple sclerosis. She was very honest with me and said that she was shocked that neither the radiologist from my local hospital or neuro radiologist from larger local hospital had identified the spinal lesion until my latest MRI despite the fact that it can be appreciated on my previous scans.

I’ve now been asked to consider which disease modifying treatment I would like to opt for. I have a further appointment with the MS nurse on 28th January. It looks like it’s Tecfidera, Lemtrada or Ocrevus. Any opinions? I’m nervous about all of them looking at the side effects.

I’ve printed off the DVLA form, told car insurance (they said they didn’t need to know), travel insurance (already had me screened as ms because disclosed cis previously), life insurance (told I need to write with any lifestyle changes or medical conditions and they’ll note it on my policy). Is there anyone else I need to tell? Do I actually need to tell life insurance company? Could they refuse to continue my cover?

Sorry for all the questions btw ☹️


stumbler
2 days ago

@smurf69 , you have to accept that all DMTs come with risks. MS comes with risks too. But, life generally comes with all manner of risks. So try and keep this all in context.

You should be able to find some experiences of all the DMTs you mention by using the Forum Search function (magnifying glass, top left).

I think you’ve covered all your bases as far as those partied that you need to tell. Any existing life insurance will continue, as this diagnosis wasn’t expected or being investigated when the insurance was taken out.


smurf69
2 days ago

Thanks @stumbler, it’s helping me to be organised about things and take some control back. I’ll start looking into the DMTs before the appointment in January although she said I didn’t have to have made a decision by then.


grandma
1 day ago

@smurf69 if one can be glad about an ms diagnosis I am glad for you. You’re not going nuts with all these strange symptoms, it’s almost a relief to be told something positive, and now you will get a ms nurse, best thing since sliced bread! I’m seeing mine on the 28th for my 3 monthly review cos I’m on Tecfidera and have to have blood/ urine checked regularly. I’m 62 and an old codger, have had the beast for 23 years, they told me rrms would become spms in 10-15 yrs, it took 23 so not complaining. But things have moved so fast in the last few years that you now have a choice of DMT’s which I didn’t all those years ago. Current thinking us to hit it hard and fast, but your ms nurse will give you all the info do you can make an informed decision based on type if ms, age, lefestyle etc., so take advantage at your Jan appointment and start the New Year with optimism.👏😍


smurf69
1 day ago

Thanks @grandma for your positive words. Can’t help feeling a bit panicky about it and like my life has paused a bit while everyone else around me is carrying on with theirs.
Haven’t really looked at the drugs too much yet but will have to at some point. What made you pick tecfidera? Were you offered lemtrada? I’m not totally sure yet exactly what I’m eligible for as the nurse is going to send out more info. She’s only given me tec and lem to look at and pointed my to the ms decision aid. I’ve had my MS nurse for a while as was only Rebif last year until my wbc lowered. She’s really good and replies to my emails pretty quickly.


grandma
1 day ago

@smurf69 I was offered a whole range of drugs, chose Tec because it was in the middle, didn’t involve needles or stays in hospital, knew it wasn’t the strongest but thought I would save them for the future in case things got worse. Same with cannabis really, it does work, but not enough to make a huge differnce and my thinking is I might need it big time in the future and my system will be so used to it that it won’t have as much effect. Only you can decide for you, take all the advice and info available and remember you can always change DMT, if something does not seem to be working you can always swap.


smurf69
1 day ago

@grandma, my WBC went too low on Rebif last year so was taken off. Did your WBC lower initially on Tec? How slowly did you start it? Any side effects?


grandma
1 day ago

Nothing unusual happened. Usual side effects for first few weeks as expected. 1/2 dose for first two weeks, mad flushing and itching 1/2hr after taking dose, full dose after 2 was, bad tun for 2 days on wk 3, then everything settled down. By wk 5/6 all settled down, haven’t looked back since. I’m 62 and will try anything once. Have had the beast for 25 years, still here, still fighting, suggest you do the same🥊😍


smurf69
1 day ago

Thanks @grandma, not sure which to go for yet. If I chose tecfidera do you think I would need to stay off work/work from home initially? My MS nurse said half dose first week and then full dose from 2nd week. Think I’d negotiate slower start than that.

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