Hi everyone, my story is so confusing to me and a lot of people I speak to and was looking for some help to understand the situation.
I was diagnosed over three years ago after an eye exam resulted in eye casualty visit and an mri. At this stage I only had trouble seeing while I walked.
Fast forward 2-3 months and an MRI I was diagnosed with highly active MS when I was 25. At that time I didn’t understand the diagnosis but later learnt it was RRMS. At the time I had 7 spinal lesions between the Conus, cervical lower thoracic and an unconfirmed number in the brain. At the time I said to my consultant I have never experienced a flare or a relapse.
3 years later MRIs have all remained stable thankfully. My diagnosis has stayed the same, never had a relapse but now my symptoms are too many to even count, including cerebral ataxia, nystagmus, oscillopsia, optic neuritis in both eyes, clonus, bowel dysfunction, spasms and slight bilateral hand weakness and numbness. All of this has happened without a single relapse or flare or new lesions on my scans.
My vision has gotten so bad that I now have permanent optic damage on OCT scans that wasn’t there in previous ones I’ve had while diagnosed.
At what stage am I suppose to experience a relapse or hopefully a remission? I have never had a single remission of any symptom even slightly, I am on ocrevus, 75mg of baclofen and another drug for Alzheimer’s (to help my nystagmus) and no symptom has ever gotten better, they just get worse in spite of all of this.
Is anyone else’s situation similar? I am so confused at my diagnosis and what is happening. I have previously went down rabbit holes even debating the possibility that I don’t have MS at all because nothing is making sense.
Any help at all trying to understand is appreciated, and I’m a first time poster here so sorry if this type of thing isn’t allowed.
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I am sorry that you are having such a worrying time. Do you have regular review appointments with your neurologist at which you can discuss your concerns? In your shoes I would be trying to bring the next one forward to get his/her perspective on what’s going on.
Hi Alison. I see my neuro twice a year and I’ve brought my concerns up repeatedly. They’ve been very cloak and daggers with me since I was diagnosed. I have asked countless times to see MRIs and have things explained but there’s always an issue with the files etc.
I didn’t know the extent of my lesion count until recently I had to get my medical file for my solicitor and I read through it, although it’s limited in time and detail.
When I bring my concerns up they just suggest new medications for symptoms. Never explain the why or the how’s. I’ve been told several times they’re incomplete recoveries from relapses (that I explained I didn’t have) and that I’ve never had a symptom appear suddenly, only get worse. For example I reported my shaky vision 5 months prior and it wasn’t taken onboard until my eyes were visibly moving at next appointment.
I am feeling as though now I am going round in circles with them and have made an appointment with my GP to get their opinion on the situation and raise my concerns stronger than I can at consultations.
There sometimes just aren’t clear answer in this game. I’m not saying that’s necessarily the case with you - I have no idea - but it seems to me that few things with MS are cut and dried. My RRMS was easy to diagnose, behaves in text-book ways etc, but that doesn’t make it any easier to know what it’s up to or what is going to happen next. I think it’s often just a matter of trying to accept uncertainty and muddle along until we have a better idea. 
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Hi JgOisback, I agree with alison100, sometimes there is no answer, which is very frustrating, I know because I feel the same and an awful lot of people on here will feel the same. I went straight in at SPMS 18yrs ago at the age of 47yrs, they told me I’d properly had MS since I was 30 after an episode with my vision, but no one ever mentioned it then and the symptoms I lived with until the from that time to be diagnosed I just ignored and got on with my life, then BANG SPMS, or as it’s known nrSPMS, no relapses, just progression, no meds for me, well I was on Gabepentin for a number of years, but that stopped helping me, Pregabalin didn’t suit me, so I just take Baclofen for stiffness and spasms, I use cold pads/towels and heat to alleviate my symptoms, I have so many issues, I won’t bore you with them all and no one has ever been able to tell me why. Now I just except it’s the nature of the condition. I’ve had lots of MRI’s in that time, only small new lesions have appeared, I remember asking my nurse why am I getting worse if there are no significant new lesions and she said you are progressing off the ole ones. Maybe that’s what you are doing, I know it’s frustrating, we’re all frustrated by this condition, we all wish there was an easy answer/explanation, but there isn’t.
Take care of yourself, just try for now to live your best life until you get to see someone, oh and on the point of going round in circles, I know I feel like that and I dare say others do to.
Jean
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Thanks for that, I tried accepting the uncertainty for 3 years but without a relapse or any remission (my biggest worry) it does start to weigh on me a lot. So much so that I was checking if I could have a similar illness causing the issues lol. I just wished either before or since diagnosis I had one clear relapse or remission so I wouldn’t be so foggy. Thanks again for your replies.
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This might sound like a strange question but : you say you have never had a relapse. I’m wondering what you expect a relapse to feel like?
My first ‘relapse’ was the development of optic neuritis in one eye. Apart from the optic neuritis i felt perfectly fine. Similarly when i developed walking problems in my right leg- I felt perfectly fine and healthy, just had problems moving the leg.
You mention that you have lots of lesions. It’s quite possible that lesions don’t result in any immediate symptoms. My first MRI revealed ‘ quite a few lesions’ but the only symptom was the optic neuritis. All MRIs since then have showed no change but I have developed new symptoms. I think that basically the old and previously symptomless lesions have slowly produced the various symptoms that I currently experience. Try looking up ‘smouldering lesions’ and Progression Independent of Relapse Activity (PIRA).
A relapse can be nothing more than a worsening of old symptoms- so, sticking my neck out a bit and happy to be corrected, it sounds as if you might well have had a number of relapses all making your symptoms that bit worse.
Remission, by the way, is just a period when things remain (relatively) stable.
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Hank Dogs, I couldn’t agree more, that’s me to a T, well done for that summery.
Jean
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Other people have put some really good replies down, but the only thing that I would add is that when I was diagnosed I asked my neurologist what sort of ms I had. His answer was that the only way he can definitively answer that is by looking back in about 10 years. If I try to wonder why the Cloak and Dagger feeling is there, the only thing I can think of is that you potentially have PPMS and your MS team know that that diagnosis means you’re not eligible for any DMT (I think that is still the case, but it’s entirely possible that I’m wrong) so that by categorising it as highly active RRMS they can continue to treat you. Equally, they just might not be sure yet and are playing it safe.
Unfortunately the nature of the beast is that it’s really difficult to pin it down and explain stuff, which is probably one of the most difficult things to get your head around about MS.
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Wow, thank yous all for such detailed replies. I’ve just been scratching my head for the last 3-4 years and for once I can relate to something that you have all said. (Thanks also Hank dogs). I’m new to this website so appreciate people taking the time to read what I said and give such detailed replies.
I had never really read much up about different types of MS as I chose to just take each day as it comes and take things at face value, so have had a lot to read up about.
I guess the only real way is to keep pushing on and see what the full story is in the future. Again, thank yous all for the advice it’s very appreciated.
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Hi, I would agree with @cymroglyn about them not saying much, or confusing you at the moment. When I first started out they weren’t sure which one I had, so I was sent to a neuro in Leeds ( I live in Huddersfield ) and he monitored me for about 18mths, then told me I had nrSPMS, so no DMT’s for me, maybe and only maybe it’s the same with you.
Good luck to you and keep coming on here, sometimes you can get a lot of good advice and ideas.
Jean
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It’s not just that I question what a relapse should be, it’s the nature of how my symptoms have behaved that baffles me. My numbness for example started 6-8 months ago in the finger tips of both hands and now it’s spread even further since then, and I have weakness between the fingers also. I’m not expecting BAM relapse, more so symptom appears gets worse for a while, then hopefully gets better over time in some way. I’m worried more of lack of remissions that I am from the lack of relapses.
I am trying to take every day as it comes but some times it’s tough that I haven’t had a single symptom get better from diagnosis and some have even degraded. Thanks for your insightful reply.
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Hi JG. As some possibly confusing context for my reply, I’ve always thought that the classification of MS into RRMS, Primary and Secondary Progressive just didn’t make sense and was somehow reassured when I saw Professor Giovanonni’s comments about ‘MS is MS’ - there aren’t different types (it’s worth looking up Professor G and his work on MS).
In that general context and in general terms I think that you and I are experiencing similar things. I haven’t had a relapse for years, and years and years but yeh, my symptoms are getting worse and new ones have appeared or , what I think is more likely, previously unnoticeable symptoms have become noticeable ( bladder and bowel issues being the bane of my life!).
As time goes by , all symptoms are getting that bit worse - mercifully not that quickly but they certainly aren’t getting better.
I think my DMT keeps new lesions away but , so far as I know, no DMT stops that gradual worsening of old and previously minor or unnoticeable symptoms.
To help myself as much as possible, what I do is to follow general recommendations on diet and exercise with the addition of meditation/mindfulness to calm the mind and body and hopefully keep my immune system ‘calm’.
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Hi @ Hank Dogs, up to a point I agree with your comments on this. But what I what to know is, why do some get DMT’s and others don’t, if there aren’t supposed to be any different types, then surely we should all get them, or we all shouldn’t. I was told right from the off, DMT@S wouldn’t be suitable for me, so now I’m confused, LOL.
Jean
This explains Prof G’s view and suggests what label you have dictates your eligibility for treatment.
“MS is classified into different subtypes which dictates what treatments you are eligible for. These MS disease subtypes are not supported biologically and I am of the opinion that MS is one disease”.
What type of MS do I have? - by Gavin Giovannoni
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While DMDs are licensed for use with particular types of MS as they are currently officially understood, there is plenty of uncertainty around what these classifications are and how much (or little) sense they make (as Hank says). My hunch is that neurologists vary in terms of whether they go strictly by the book on this. It may be that some regard the boundaries as rigid and some don’t - or at least don’t always. My guess is that most doctors will want to give their patients the benefit of the doubt where there are treatment options that might potentially help them. But on the other hand, no doctor wants to subject to patient to a potentially harmful treatment if it’s futile.
I don’t understand it fully, but I think the problem is two fold. From the little I know I think that MS and DMTs ended up being classified into different types because of drug licensing regulations! Something to do with getting faster approval for conditions that affect a limited number of people. I think that basically it a result of drug licensing regs in the US! Unfortunately, that idea of there being different types has taken root and the medical profession has it ingrained in their collective mind that there are different types of which some aren’t suitable for treatment. Basically and from gut feeling I agree fully with what Professor G says.
I am wondering if there is any way in which you could get your Neurologist to reconsider ( for what it’s worth I will think about it )
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I buy into the thinking that MS is just MS. Subtypes are the confusing bit that always have stumped me, when they say one thing and your condition and the way it behaves contradicts it.
I know next to nothing aside from my own situation. I have been one of the patients that bury their head, read nothing, and hope it goes away. Silly I know but it’s the way I’ve dealt with it these past years.
I’m maybe going to try stay more informed on subtypes and possible crossovers to see if I see any relation, a previous comment above mentions PIRA but I don’t feel that’s applicable either as you need to have one clinical relapse I believe to be deemed that. Either way a lot of posts on this thread have gave me information I was never aware of previously and for that I’m grateful.
Think I should take more notice of the MS updates and what is being said by professionals and people who know a lot more than I ever will.
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Thanks @Hank Dog, I will have a look at Prof G, I never read anything by him. I did bring this up again, not only with my nurse, but also will the neuro and was told that DMT’s wouldn’t help me at all, so that’s that. I’m 18yrs into this journey now, so is it too late anyway. I know of plenty of others in the same boat as me,
Take care of yourself.
Jean
Thanks @alison100 , I was just told they wouldn’t benefit me at all as I didn’t have what they called significant relapses, just a downward spiral of symptoms, end of.
Take care of yourself and enjoy the sunshine if you can.
Jean x
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