Hi everyone,
Haven’t posted on here for ages so apologies for a long post…
Following several neurological symptoms including tingling, numbness and eye pain, I first saw a neurologist back in February. I explained that I’d hand tingling in my feet a few years ago which lasted a few weeks then went away and I thought no more of it until my more recent flare up (which kicked off in November). He was very dismissive and put everything down to anxiety. Even made a ‘joke’ that my husband would be finding another woman if I kept on documenting every little twinge in my body like this. I think he found my very long list of symptoms a bit ridiculous.
Anyway he agreed to do a brain and spine cervical mri and vitamin blood tests ‘to put my mind at rest’. I had slightly low vitamin d but nothing remarkable for winter. The mri was done the week before lockdown and when I eventually got hold of the results it said they were clear, which I just couldn’t believe.
I spoke to my GP as my eye pain was becoming unbearable and my vision had gone funny, constantly seeing my nose in my field of vision, as weird as it sounds. GP said you need another mri really but you’ll be waiting months so if there’s any way you can go private do. Called my husbands insurance not expecting them to cover it as it would be pre existing but they said they would.
My new neurologist is so much nicer. He said he also thought it wouldn’t be MS but he’d do a spine and eye socket MRI and a visual evoke potential test. The mri this time showed two white dots on the brain (visable when they checked the eyes). He said two wasn’t much to worry about, they allow one per decade of life so in my case up to 3 would be ok. But my visual evoke potential test also showed a delay in the signalling between eye and brain in both eyes. He said it was slight so again not anything conclusive. He said it could always be mild MS - Is that even a thing? Next step lumbar puncture and he also ordered the longest list of blood tests ive ever seen.
So I guess lumbar puncture will decide it. I feel like I know it’s MS and in a way maybe a negative lumbar puncture would be worse because it would delay a diagnosis even further. On the other hand who ever wants to hear those words?!
I’m so sorry for the long post. I realise I’ve rambled out an essay. Just feeling so emotional and lost this week so thought I’d share here and if anyone has any comments or insights would love to hear them.
Hope you’ve all been keeping well through these strange times…and some of you made it down the pub!
Charlotte xxx
Hello Charlotte
I don’t think it’s unusual to prefer to get an MS diagnosis than just be suffering symptoms for years with no explanation why. Sometimes just hearing the words ‘it’s MS’ take a weight from you that you didn’t even know was there.
Saying that, somehow it can still be a shock to the system to finally know it is MS (assuming that’s the case). You still have finally been told you have a lifelong nasty disease. And that bell can never be unrung once you’ve heard it!
The neurologist you saw in February sounds like an utter pig. (I’d call him worse, but the moderators wouldn’t like it!) Bloody male chauvinist pig.
I really pleased for you that you’ve got a way of having the necessary tests etc done privately. At least (with luck), you will find out one way or another. I’ve never heard about ‘one white spot on the brain per decade is normal’ before. Very odd. If the white spots are clearly demyelinating lesions, that should be visible. Which makes it MS, even without a positive LP, especially given the VEP result. This is what neurologists generally use for diagnosis: https://www.mstrust.org.uk/a-z/mcdonald-criteria Nothing is said on anything I’ve read previously about other white spots being ‘normal’. But he’s the neuro, and I’m not, so put your trust in him. Or ask to be referred to an MS specialist is he isn’t one.
Best of luck.
Sue
Hi Sue,
Thanks so much for your message. I know exactly what you mean and feel the same about the white spots myself. I have read somewhere else on the site that it is up to a neurologist to decide if spots count as ms lesions or normal aging but I followed the link you shared and the criteria clearly states two is enough so seems a bit contradictory. I suppose the lumbar puncture will determine it one way or another. If it’s negative, which I very much doubt it will be, then I will certainly ask for another opinion if he doesn’t diagnose.
part of me wonders if he’s just easing me into the diagnosis gently rather than dropping a bombshell after initially telling me how convinced he was it wouldn’t be ms. My first ‘clear’ mri has really muddied the waters. That one was done on the nhs and hopefully they’ll send the disc images to me soon as I’ve requested them. I’d love to know if it was really clear or someone making a ‘normal aging’ judgment when they reported it as normal.
What a confusing disease this is! I can’t think about anything else at the moment. Have no idea how to feel about it all. I’ve ordered a book about ms and nutrition as I thought at least eating well is one positive step I can take in the meantime.
Thanks again for your response. It’s nice to hear from those who have been through all this before.
Charlotte xxx
If I’m not mistaken any white spots need to show as inflammatory and representing demyelination. Some spots can just be vascular bundles in nature, so I’ve been told from my Neurologist. What represented MS potential in my case, was an MRI which reported “lesions, inflammatory in nature, and likely showing demyelination”. The age spots stuff I’ve heard, because I had a few white spots but only 2 of which represented a concern.
So on the diagnostic criteria that was referred to earlier on, the lesions not only need to be there in number but they must be particular in nature, not just white spots.
I’m also awaiting diagnosis and if my lumbar puncture doesn’t show the binding proteins they look for, then I’m going to assume I don’t have MS. It IS confusing and stressful. I work in the NHS and don’t fully expect anymore diagnostic testing to take place for another 6 months where I am going. I’ve just had to put the entire thing out of my mind for now and have even stopped making diary notes of symptoms as I just wasn’t thinking of anything else.
Jo x
Hi again
MS is the most perplexing, contradictory, peculiar disease ever. One minute you think you have a handle on it, or at least, on your own particular variant (we are of course all utterly different), then suddenly the rules change.
On the one hand I hope you don’t have the bloody disease, but on the other, I hope you get the diagnosis so at least you can relax for a day or two!! Excellent idea to get a disc of your first MRI - the job then will be to get the neurologist to view it in the light of what he’s already thought about you.
Eating well is good. For all health conditions, not just MS. Personally, I’m not a fan of particular diets that exclude things like gluten because someone believes we’ll be healthier without it. Or the regimes that want you to take a million different vitamins and food additives. Vitamin D is a good idea - most neurologists recommend it, but you should get your level checked, even if it’s after you start taking a supplement (I take 4000 international units per day). But, just like everything related to MS, we’re all different, what suits you (again, assuming you are diagnosed), is going to be different to me!
Keep reading about MS, and keep asking questions. It’s the only way to learn. But don’t believe everything you read. Stick to reliable sources, like the MS Society on this site (see the tab labelled About MS). Plus the MS Trust (do a search on the aspect of MS you wat info about, and MS Trust - they have hundreds of fact sheets and pages of reputable info). Don’t forget that the contributors to this forum - including me - are amateurs. We know only what we’ve experienced and some of what we’ve read. So just because I seem like I know what I’m talking about, it doesn’t mean I do!
Best of luck Charlotte. I’ll be keeping my fingers well and truly X’d for you.
Sue
Hi again,
Thanks so much for your replies both of you. I totally know what you mean about the strict diets Sue, I’m gonna give one a go and record my symptoms during that time and if it doesn’t help then I won’t be sticking to anything like no gluten. I also think it’s a fine balance between physical and mental health that needs to be achieved, and obsessing over every last ingredient you consume is going to cause more anxiety and mental health stress than physical benefit. So it’s finding a happy medium. But at the moment if I can google fruit and veg rather than ms for a while then it’s kind of helping from both angles. I say this after I’ve just had a glass of red wine and some chocolate buttons!!
Interesting that you work in the nhs Jo, how scary to think how long we’ll all be waiting for any tests etc on the health service in the year to come. Could you go on a cancellation waiting list to maybe speed it along? Thanks for your comments about the MRI - I think that’s what he was trying to explain to me. I asked if they were leisions and he said no,no, they’re areas of high signal intensity. But when I looked that up when I got home it said that’s exactly what a leision is! So now I wish I’d asked him to tell me the precise wording of the report. He also said if he had done the report - and to be fair he said it wouldn’t be his job to do so so we needed to go with what the radiographer person said - then he would have passed it as normal. Strange and scary how open to interpretation they clearly are. If only there could be a simple blood test for it hey?
Good luck with the next bit of your journey anyway. I agree symptom diaries can take over life a bit. I try and only record really significant changes now instead of a daily thing.
Thanks again for taking the time to respond. Really does mean a lot x x x