So my neurologist phoned me and said that the results of my mri showed two patches of inflammation on my neck and several hyper intensities on my brain and nothing else. She said that between my result and the fact I have only had sensory symptoms only that I have a mild case of ms. It’s borderline whether she thinks I need medication or not and is thinking she will “watch and wait”. Bit of a stupid question but does this mean I actually have ms? I know everyone is different but I had a perfect neurological examination and no other ms symptoms whatsoever. I’m finding it hard to digest? Please help
Well, she did say you only had a mild case of MS…so I guess yes, you do have MS!
But if you feel you need further explanation (and why not?) try ringing her secretary and see if you can get a follow up appointment.
pollx
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Is that enough to diagnose me with ms though?
As Poll said, go back and ask.
I was diagnosed with benign MS with very few symptoms about 20 years ago. Told to take fish oil, avoid viruses and get on with my life! Not sure if they still give that diagnosis.
Now developed into SPMS.
Stay well,
Jen x
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So did you live with few symptoms for 20 years and it’s flared up now? X
???
Sounds like a stupid neurologist. Is she an MS specialist? If not, maybe you could ask to be referred to one?
If she is an MS specialist, I think you should be perhaps asking for an appointment to discuss, at what point she would normally be recommending starting a DMD.
Meanwhile have a look at the MS Trust decision aid: MS Decisions | MS Trust in particular see the frequently asked questions, there’s one about when you should start a DMD. The general guidance these days is start a DMD as soon as possible.
So it seems you have two very important questions:
-
Do I have MS? What is meant by a ‘mild case’ (I’ve never heard of such a thing! But maybe it does exist)?
-
If I have MS, when should I start a DMD? If the normal advise is asap, why not now?
Sue
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Oh, and when you have the answer to question no one, you might have to change your user name!!
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Yes she’s a specialist. Why would she say I’m “borderline” whether I will receive/need treatment? I’m confused?
I agree with this.
The “watch and wait” approach is very old school. The association of British neurologists published new guidelines in 2015 which set out a consensus on the importance of early treatment of MS with dmds. I’m hopeful that this will be a game changer for those of us that are newly diagnosed - and should give all of us (and not just those who can eventually say they have benign Ms) a much better long term prognosis.
It is my view that there is no such thing as “mild” MS. I have only had mild symptoms so far (numb toes) but although Symptoms may start mild, and in the case of benign MS they may remain mild, there is a risk that the next attack won’t be so kind (and could be the one that results in permanent impairment) and that accumulative damage/ brain atrophy can occur even with mild symptoms. In addition, as benign MS can only be determined in hindsight and the odds are against it (only 10-15% of people diagnosed with MS have benign MS) and even most benign MS eventually turns progressive, I decided not to by my chips on it and jumped straight into DMDs (having received my first course of lemtrada 6 weeks after my formal diagnosis of active RRMS).
Obviously this is a personal view point - but I would def push your neuro for a clearer explanation, with reference to the new guidelines.
Good luck! X
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I would also be confused. She may mean you are borderline as to whether you need drugs/ treatment to deal with any on-going symptoms (e.g. Painkillers/ steroids etc). However, anyone diagnosed with RRMS should be offered a DMD. The class of DMD made available will depend on whether your disease is active / highly active. If it is not active, one of the moderately effective drugs (which can be prescribed for pre-MS people with CIS) can be made available. It would only be if you have a diagnosis of progressive MS that DMDS wouldn’t be available. Def. worth pushing your neuro for clearer information.
Xx
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It’s a post code lottery who you get to see neurologist wise. It is an absolute joke I am sorry to say (from my experience), I agree you would be best pushing for clarification.
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I agree with everything you’ve said Katy.
Push for more explanation.
Sue
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Hello. I was in a similar situation 30 years ago. Mostly sensory symptons which had gone by the time I was told it ‘may be MS but go away and live your life … have children … etc.’ Which I did. Remained well and active 15 years or more but then SPMS. I did not get the opportunity to try new treatments and DMDs on initial diagnosis. I would push for the best possible care, attention and treatment if I were you. SPMS is not a barrel of laughs. Good luck.
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One further point to add - it is important to understand whether you have been diagnosed with MS as there are legal consequences that flow from this. E.g - you must tell the DVLA to get moved on to a 3 year licence and your car insurance, you may need to tell travel insurers, it might be possible to claim under any critical illness policy you have and you’ll be protected by the equality act at work. This is the case even if your symptoms are just mild/ sensory (as mine are).
xxx
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From what you say, it certainly does sound like an MS dx. For what it’s worth, my understanding is that starting with only mild, sensory symptoms is generally regarded as a good sign in terms of how your MS is likely to behave in the years to come.
My MS was more obviously aggressive from the start, and my neuro was as keen to get me on a DMD as I was. However, I do think that the mainstream thinking on DMDs has changed since those distant days back in the late 1990s, and that many MS specialists are now keen to treat fast and early, even when MS is not obviously on the rampage (yet). Which doesn’t mean that ‘watch and wait’ is necessarily old-fashioned, let alone wrong - your neurologist knows you and your MS much better than does any of us armchair experts on here. It is probably fair to say that ‘watch and wait’ is a less popular or general approach than it used to be. But I would go every time with the opinion of the expert who was advising me in particular over the non-expert who was thinking in generalities.
Alison
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Hi
I was diagnosed 13 years ago - only needed medication twice - just before christmas last year when I spend too long in a car without moving & beginning of May when I went for a 2.5 mile walk and my legs were not happy. Both times the medication was temporary.
I go dancing, I go to the gym & loads of other activities. I do have to be aware not to overdo things cause fatigue can be a pain but I can still go ballroom dancing for 2.5 hours.
It sounds like you might be like me. My evoked potentials were normal - no lumbar puncture thanks goodness - but mri did show lesions. So yes - I have MS but I’m one of the lucky ones.
JBK xx
p.s. listen to Poll - she knows EVERYTHING
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Not sure that is enough to diagnosed you of any forms of MS. I had loads of positive stuff and it took 10 years to get diagnosed i thought they had to go through the McDonald criteria, so i would certainly have this clarified hun.
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Ok results are in! Saw my neurologist last week and received my letter today. I have, in her words, 4 very small white spots on my brain MRI and 2 small patches of TM showing on my spinal cord (neck). The neurologist says she is comfortable to leave me at the moment, watch and wait and review me again in 6 months. She is definitely erring towards ms but not 100% sure. Ive had 2 episodes but because my left arm was affected both times she’s not sure if she would class the second one as a “flair up”. Everything I have had so far has been minor and mild. Is this enough to make a diagnosis? Haven’t had a LM or any other tests just an MRI. Neurological examination was all clear. Thank you
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Hi,by LM, do you mean LP…lumber puncture?
An LP is often used to make a diagnosis, or to give more evidence towards a diagnosis.
I would`ve expected to have one if the MRI wasnt enough to make that diagnosis.
They also use EMG and VP tests for further evidence.
Pollx
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Hi, I was diagnosed nearly 10yrs ago after 1 major episode, temporarily lost sight in my eye, had an MRI scan which showed demyelination but was told it was probably benign MS. I have not been on any treatment in the last 10yrs, other than trying Tecfidera last year which I couldnt tolerated due to side effects, and have had no major issues other than fatigue. It is only recently that I have had another MRI scan and it has shown progression of lesions even though I have only had very mild symptoms. I am only now going to start a treatment to try and slow down progression, which in hindsight I think I should have done years ago, but when I was diagnosed it was very much a "wait and see"process. I would say MS is MS whether benign or not and would start a treatment as soon as possible. The disease can be still active in your brain without you realising it. The hardest part is deciding which treatment to have as the side effects can be worse than the actual disease, well they are in my case anyway! Good luck.
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