Hi everyone, I’m new here. I had vision issues in 2017, and nothing since except a weird sensation in my right arm and right leg lately. I have lesions on my MRI which haven’t changed and have oligoclonal banding from a lumbar puncture but not fulled been diagnosed yet. My doctor has advised to wait and see or look into treatment, has anyone had a similar experience and gone with treatment over waiting? Thanks :)x
Hi Kiwi
Hmm… “wait and see”. We’re hearing a lot of that lately. Blame covid, blame staffing levels and insufficient resources. But avoid committing to a diagnosis, avoid a treatment plan and kick the can down the road for a bit.
I’m in the same boat, so you have my sympathy and understanding. I was misdiagnosed for years and in retropect, my MS has been progressive from 2016 even though I was only diagnosed in Feb’21. So to me, I’ve had 5 years of waiting & seeing…
I became concerned that my progression may be accelerating and after some unplesant calls with my so-called team in which I was bouncing around ideas and they were parrying each one, I said “let me state for the record that I have proposed these ideas and you have rejected them. If one of these suggestions turns out to be valid, that would make you negligent, would it not?” The MS Nurse I was speaking with referred the conversation to the MS Consultant who called a case conference, from which I’ve had various new or repeated tests. It would appear that if you want anything done in the current climate, you have to make a BIG NOISE! They are scared stiff of getting sued. And it doesn’t come naturally to most people - we don’t like to make a fuss.
My advice would be to:
- Do your own research, specifically with regard to your own case.
- Challenge them!
For balance, there are valid reasons for “wait & see”. As MS relies on progression of symptoms for measurement and decisions about treatment, so if a test is repeated too soon after the original test, the increment of a symptom’s development may be too small to make a meaningful judgement. However, there are fewer excuses for using “wait & see” as a reason to do nothing at all.
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Further to my previous post, I’ve dug up this post from the highly respected “Prof G”:
The consequences of not treating MS
Well worth subscribing to his channel.
Edit: have messaged Prof G and he’s replied on his channel.
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How is your doctor expecting you to get treatment if you haven’t actually been diagnosed yet? It’s my understanding that they have to decide you really have MS before you’ll qualify for taking the meds for it. They’re too expensive and have too many potential side effects to just hand out to people randomly.
Depending on how long it’s been since your last MRI, I’d start by pushing for a new one and then go from there.
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‘Wait and see’ is grimly amusing advice to give someone whose eyesight is at real risk from this disease, isn’t it?
I was diagnosed 2 decades ago, and I couldn’t get on DMDs fast enough. My MS was aggressive from the start, and I have no doubt that I am as well as I am today because I have been on increasingly strong DMDs from the beginning.
We are talking about your central nervous system here, not your neurologist’s. In your shoes, I would be making it very clear that I wanted medication to help me stay as well as possible for as long as possible.
Good luck with it all. I am sorry about your dx.
Thanks for your reply!! I think it’s just a formality here in the UK? I’m not quite sure but in each appointment he talks about either starting preventative treatment or waiting. I’m 31 now, and have had MRIs over the last 4 years with no changes to my Lesions, but I do have the OB in my spinal fluid. I’ve only really started to look properly into MS now, and it seems like the numbness could mean I really need to start researching it and making a plan.
Thank you super helpful.
Thank you so much for your reply and your comments! Sounds like a tough process navigating the NHS system here! I was 27 in 2017 and really just didn’t think too much of it at the time, it all seemed very scary hearing I may have MS. I have been having annual MRI scans to see if the lesions have changed and they haven’t, even the one this year. I only had the LP at the end of last year to confirm the OBs in my spinal fluid. My doctor hasn’t officially diagnosed me with it yet, and I haven’t been referred to an MS nurse/department as I guess I haven’t come to a discussion if I want to start preventative treatment? I’ve only really started looking into MS since the numbness started and reading everyones comments in this forum, which seems to be just how it starts. Did you ever request a second opinion in your case?
Good question Kiwi! No I’ve not yet sought a second opinion but I will do if I don’t get satisfaction in the next week or two.
My MS Consultant is by the book and not an approachable person. The MS Nurses are gatekeepers. Collectively they are reactive, not proactive until provoked.
Like you, I sensed a change was going on in my body: me with an uptick in the progression rate, you with your new symptom of numbness. The acid test will be how responsive each of our teams are to this new information.
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Hello
So, you have lesions (I assume demyelinating?) and O bands in your CFS.
Your doctor says ‘wait and see’. Does this mean s/he has diagnosed a Clinically Isolated Syndrome? Or MS? Because given lesions and O bands, there’s not much else they can do. ‘Wait and see’ isn’t a diagnosis.
Personally, I wasn’t like Alison, I didn’t have aggressive MS from the start, mine was fairly gentle for the first 8 to 10 years. But as soon as DMDs were an option (they weren’t until 2002 and my MS began in 1997) I started on one. To be honest, I never considered not doing. Plus, my neurologist in 2002 was Professor Giovannoni - he kind of didn’t really offer me a choice, apart from ‘which one?’
I feel that assuming it is MS you should as GCCK said, push for a DMD to prevent future relapses and possible disability. If it’s diagnosed as CIS, again, you have the right to a DMD, albeit the options are more limited.
I don’t think (in my opinion), that you should just let your neurologist sit on the fence. To wait and see if you get more symptoms, possibly a major relapse and subsequent disability is a really bad idea.
Why not write to your neurologist, asking him to explain what he considers is wrong with you. Request a disease modifying drug in order to prevent relapses and a firm diagnosis. Or, if he feels that insufficient evidence has been found to make a diagnosis, what further evidence you might be waiting for.
Something you may find interesting is Professor G’s latest ‘MS-Selfie’: Case study: MRI-negative relapses - by Gavin Giovannoni It could be directly relevant to your situation.
Sue
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Yes, Sue. Today’s MS-Selfie was fascinating. It struck a chord with me and very possibly be relevant to Kiwi too. The podcast is a must-hear too. Prof G is attempting to redefine MS as a biochemical disease and the lesions & inflammation as the body’s response to the disease. It drives a truck through the fixation with MRI results being the driver of treatment when in fact some lesions are too small to be properly resolved by present MRI’s. It explains how some (Kiwi & me?) could be falling through the cracks - disease still advancing yet diagnosis is inconclusive. Prof G calls it “smouldering” MS among other things.
Independently I was reading up on some old research (yay, livin’ the dream!) that suggested that Primary Progressive MS shows up around 1/6 the lesions of Secondary - the variant that is spawned from RR MS. It could endorse the notion that PPMS is a biochemical disease which doesn’t provoke an autoimmune reaction. We’ll see…
Graeme
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