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Still confused about my '60% chance

hi, this is only my second post, I will try to keep it short

earlier in the year I was told I had optic neuritis after a slight blurring as in my right eye, which followed a sty and bad cold. I’d also spent a few months before that having weird electric shocks when I moved my eyes to the right, I’m still of the mind that was caused by ssri and anti psychotic withdrawal.

I had a brain and eye MRI and everything came back clear, they didn’t do my spine and the neuro said I have a 60% chance of going on to get ms and to go dr if any new symptoms. I had a mild vit d deficiency. I’d like to know where he got that 60% figure from

I have shaky hands and lost full sensation briefly in my right hand that lasted a day and then my left hand.

Last week, I had another sty, and slight eye pain along with weird tingling and numbness now I’m getting weird cold/hot pain in my butt but only in certain sitting positions. My dr made me think I’m imagining it but I’m not.

gp has been really rude (I had to take someone with me to confirm how rude he was) kept telling me it was anxiety but begrudgingly referred me back to neuro after repeated visits which I’m waiting for. He told me I was asking stupid questions

It got bad on Friday so I called a different dr who pretty much said yeah sounds like ms.

im so confused. I’ve been getting a weird pain in my foot while walking that makes me limp, it feels like a snapped tendon but then it goes away and only happens while walking, and so many other little weird things. I know these things don’t sound that bad but it is kinda worrying especially pins and needles so often

they seem to come and go frequently and I’m worried I would have the progressive type. I’ve had so many health problems over the last few years and I want to figure it out, I don’t feel like any things been explained to me or been told what’s gonna happen going forward like scan or appointments or whatever. I get that it takes a while to diagnose but Im not one to sit around and wait for things to get worse. I’m a musician and I’m so scared about losing the ability to play. I’m trying to be positive, but honestly I’m really scared

Hi Anon,

A very similar thing happened to me. I had ON in February and was referred to a Neuro-Ophtamologist. After an MRI of Cervacial spine and Brain, where they found 1 lesion in the Brain and one lesion in the thoratic spine, the Neuro O, said that she thought I was at very unlikely I was at high risk- so she put me in the low risk category, but asked for an MRI of my entire spine. I did that, after which they found another 3 lesions in my cervacial spine. She then said, she thought I was at medium risk, but to go on my way.

It wasn’t good enough for me, as I read a lot about it and it didn’t make sense. So I saw a MS specialist neurologist privately. That was a whole other story, he basically diagnosed it straight away ad now I can take DMD’s. He had no question it’s MS.

That’s why I would recommend for anyone to just see a specialist. I think some neuros are old school and others (usually the specialists) want to diagnose early, as this is what they do nowadays. Years ago, they wouldn’t diagnose to early, as there was not much point, as there were no treatments.

Just to add, my GP also didn’t let me have another Neuro appointment and told me I was ‘anxious’ etc. I wasn’t. I had just done my home work and I didn’t have a proper explanation and I doubted the Neu-O. It didn’t add up for me.

So my advice is, try and see a specialist.

Thanks,

Emily

Thanks for sharing, how do I get them to give me another MRI including my spine? Apparently I didn’t have any lesions so I am confused why he said 60% Chance. My neuro appointment is in a few months time, but I feel like I should have the MRI first, otherwise I feel like I’d be wasting time.

Hi Anon,

You could try seeing an MS specialist privately- if he/she decides you need an MRI, you can be referred back to the NHS to have the MRI done. Take all your MRI images/ or reports and all else to a private MS specialist and then he/she can decide what’s next. I think you’ll be fighting a losing battle trying to convince your GP.

I am also a bit confused, why your chances are 60%, seeing as your MRI was clear.

I just found this with a quick google search, it was a study on the likelihood of developing MS after ON:

"Results

The cumulative probability of developing MS by 15 years was 50% (95% confidence interval 44% to 56%) and strongly related to presence of lesions on a non-contrast enhanced baseline brain MRI. Twenty-five percent of patients with no baseline brain MRI lesions developed MS (This would be YOU Anon) during follow-up compared with 72% of patients with one or more lesions. After 10 years, the risk of developing MS was very low for patients without baseline lesions but remained substantial for those with lesions. Among patients without MRI lesions, baseline factors associated with a substantially lower risk of MS included male gender, optic disc swelling, and certain atypical features for optic neuritis.

Conclusions

The presence of brain MRI abnormalities at the time of an optic neuritis attack is a strong predictor of the 15-year risk of MS. In the absence of MRI lesions, male gender, optic disc swelling and atypical clinical features of optic neuritis are associated with a low likelihood of developing MS. This natural history information is important when considering prophylactic treatment for MS at the time of a first acute optic neuritis attack. "(https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440583/)

Hi If your symptoms are coming and going fairly quickly, chances are they aren’t caused by MS. Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/relapse The Trust make it clear that an MS relapse should last for at least 24 hours. At least your unpleasant GP has referred you back to a neurologist. Perhaps they’ll do another MRI, you could ask for the spine to be done as well as the brain? I suspect that telling you there’s a 60% chance you could go on to develop MS has been pretty unhelpful at best and deeply worrying at worst. It’s perhaps led you to think everything that happens is now due to MS. Which it could be, but without that thought in your mind would you have expected it? Why though would you assume that if you had MS it would be primary progressive? Surely the fact that you had an episode of optic neuritis which got better on its own would make you think that if diagnosed with MS, relapsing remitting would be far more likely? And if so, there are so many disease modifying drugs nowadays that your music need not be affected. Then again, as you’ve said you determined that your earlier optic neuritis was caused by a drug withdrawal, it’s possible that you’ve not had previous symptoms that indicate a likelihood of MS at all. Did your GP retest your vitamin D? If you had a mild deficiency, this could have got worse and it’s actually possible that a deficiency of vitamin D could be causing some of the symptoms you are ascribing to MS. You could ask for it to be tested again? Sue

Thanks for all your responses. I don’t think I was very clear in my first post lol, I’m not really with it lately. I meant to say that I’m not sure what the first Optic neuritis was, but that the head zaps were caused by my medication. The nurse told me I had Labrynthitis, and that my eyes were shaking and then a different doctor said I had Menieres disease, and reffered me to an ENT. Before my appointment I got blurred vision and was sent to Opthalmologist, who diagnosed optic neuritis, and asked if I had been having numbness and tingling which I had and put down to medication withdrawal. Opthalmologist said I was fine when he saw scan. Randonly got a call saying had Neuro app two days before it was scheduled.

Neuro told me to go get my mum then said I had a 60% chance. I saw a copy of the letter to my GP which again stated the 60% chance thing, and that I had told him I was emotionally unstable ( I said I had mental health issues when he asked about why I was on medication) I was shocked at the app. and he kept interrupting me and asking weird things like where my bag was from. Didnt manage to go through any symptoms with him really at all. looking back i’ve had strange episodes of pins and needles, falling over and walking in to things and I have been dizzy since I was about 17 (late 20’s now).

My hands have been gradually getting more shaky and now they actually jerk if I try to hold them still. I’ve had periods of mixing up words and not being able to remember how to spell which have lasted weeks at a time. Some things last persistently for week and haven’t really gone awa. Numb hands both lasted for a day, then seemed better the next day but the altered sensations come and go often, for example I’m struggling to pick up pieces of paper and, my toes always feel buzzy. It goes away breifly but then it’s there pretty much every day. for months now and it just seems to be getting worse. My understanding was, you have an attack, then you go back to being ok in RRMS (I am no expert at all I am new to this), but my issues seem to be gradually piling up and not going away completley (apart from the ON - although I still get odd visual things) I’ve been treating the Vit D deficiency. I dunno, I am not expecting to be diagnosed on here it just feels better to write it all down and try and make sense of everything. Any time I’ve tried to speak to a medical professional I feel like they just want me out of the door and I’ve been prescribed things I’m not allowed at all and could really hurt me, it’s like they don’t even read my notes…I don’t expect if I go to the DR they will arrange another MRI for my spine.

If it isn’t MS I’d like to know what is going on with me. I Know I have to be patient but it is scary when I suddenly lose feeling in my hands(it’s happening in half my right hand now). I have a lack of trust for Dr’s having nearly died due to being fobbed off before. And losing my Grandfather because he was fobbed off with stress when infact he had a serious heart condition and died soon after, he was only in his 40s. Having to deal with them is so stressful, I commend people here who have to deal with them on a regular basis, Although I am grateful for the brilliant work most of them do, just seem to be unlucky lol.

also I should add, a different DR who I spoke to over the phone told me “nothing apart from MS can cause that set of symptoms so wait and speak to your neurologist” I feel like thats a weird angle to come at it from and they didn’t think I should come in for an appointment, he just kept stressing for me to wait and see. Which is fair enough but I feel like I can save them time and money if they just sent me for a scan first. I imagine neuros are expensive so surely that would mean I’d have to go back again after the scan anyway.

Relapsing remitting MS has a pattern of relapses, which are new or repeated symptoms; which last for more than 24 hours and have appeared at least a month after the last time you had that symptom. Remission from relapses can be complete or partial. For example, I had my first relapse 21 years ago. Since that time I’ve not been able to properly feel my feet, so I had only partial remission from that. Although I’ve had optic neuritis several times, from which I’ve had complete remission. Sometimes you can also have a relapse that takes so long to remit, and leaves a good bit of damage behind it which then impacts onto your muscles, so muscle weakness can add to the nerve damage for more long lasting symptoms or immobility. So you can have RRMS and be quite badly disabled. Or you can have fewer relapses (often aided by disease modifying drugs / DMDs) and less or no disability.

Primary progressive MS (or in fact Secondary Progressive, which RR can turn into as it has with me) is not characterised by relapses and remission at all. Damage done in a progressive form of MS is generally not subject to even partial remission. But people with progressive MS can have a slow steady decline or a faster variant which can cause more disability faster.

It’s quite possible to have either RRMS or PPMS and be only very slightly disabled, or not at all. It’s also possible to have any variant and be quite badly disabled. Essentially MS does what the hell it likes.

Unless you have RRMS and a decent DMD. In which case, your relapses are likely to be reduced (the reduction profile of each drug varies) and the severity of those relapses reduced.

But - and it’s a big but - you don’t have MS until a neurologist has tested you in many different ways, and says you do. I find it quite irresponsible to tell a person that they have whatever percentage chance of getting MS. Particularly when you have no brain lesions, your spine hasn’t been MRId and you’ve not had any other tests, like Lumbar Puncture or Evoked Potentials.

The reason for seeing a neurologist before having an MRI is for the neurologist to decide whether s/he thinks an MRI is warranted. And they do this by taking a history from you of what has happened and when, plus they carry out a physical examination. They don’t just see you, tick a box and send you for an MRI. Or they shouldn’t.

So before your appointment, it’s a good plan to have written yourself a history of what has happened and when. Note how long symptoms have lasted, whether they have resolved or are still symptomatic.

And as far as I’m concerned, the doctor who said ‘nothing apart from MS can cause that set of symptoms’ is probably wrong. You can have a whole load of symptoms that could be fitted into an MS diagnosis and not have MS. That is proved everyday on this website. Lots of people come on here with symptoms that appear to fit an MS diagnosis and ultimately it’s proved not to be. Unfortunately, in the diagnostic process, they often convince themselves that it is MS, causing a massive amount of worry and fear unnecessarily. It’s a total bugger that it takes time to be referred, have an initial appointment, have tests, get another appointment, etc. What you want, and could do with, is for everything to be done within 10 days or less.

You, and everyone else in limbo have my sympathy.

Sue

Thank you Sue, You really cleared things up a bit for me and everyone else has helped with their comments. I am a generally positive person and am quite tough really… as you may be able to tell I absolutely hate relying on medical professionals and waiting lists, etc. I don’t feel like I would be as concerned had he not told me about my risk. My GP was strange about the 60% thing, he said “yeah well you don’t have it yet, that’s like me having a 60% risk of a heart attack” and so I said, if you knew that you had such a risk of heart attack, would you not want to know what you could do and be prepared? he just looked at me like I was a lunatic. I might look at changing GPs in new year

I agree with Emily’s post above: get in to see an MS specialist as soon as you can. I have been on a nightmare roller coaster for the last 5 months, ever since I had an MRI and my GP said “oh, you have MS”. After that, it was conflicting information from various doctors who, quite frankly, do not have the knowledge/experience needed. I think exploring a possible MS diagnosis is far beyond the scope of most generalists, and it would be helpful if they would all just admit that; instead, some of them want to appear to be the experts on everything, in turn harming patients with information that isn’t necessarily valid.

To make a long story short, I went to see an MS specialist yesterday and she does not think that I have MS or any other neurological disease. She disagrees with the radiologist report of my original brain scan, and can’t believe that I was told I have MS by my family doctor.

You are absolutely right Sherwin. Only after a neurologist (& preferably an MS specialist) has seen all the MRI, LP, VEP and other results, can they make a diagnosis of MS. A GP cannot diagnose MS, nor can they definitively state that you don’t have MS. I’m very glad for you Sherwin, that your news is good. And really sorry for the months of misery you’ve experienced. Sue