Struggling...

New diagnosis and before diagnosis
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Hello

I’ve been lurking here for a while so thought it was time to start my own post on this helpful site. Thank you in advance for listening…

I haven’t been diagnosed with anything but am at the stage of wondering and worrying. My main issue I guess is my bladder - I went into retention after the birth of my first baby back in March 2016, couldn’t pass anything for 5 weeks so was catheterised and then moved to passing some myself and self cathing the remainder. That went on for about a month until gradually things got back to normal and I didn’t need to self cath at all. My second baby was born last June and the same thing happened - couldn’t pass anything for a few weeks afterwards and then moved to ISC. All pretty awful, the only slight positive was that I’d done it before so it wasn’t completely alien (coupled with a newborn and lack of sleep it was still horrible though!). This time things took a bit longer to return to normal plus my signalling is all off. I basically have no urge to go the loo at all or I have an urgent need and usually need to go every hour. This didn’t happen after my first birth (apart from literally one day I recall!).

3 months after the birth (in September) I had an mri of my lumbar spine to see if anything - other than pregnancy and bad births - could explain my bladder probs. It showed up a disc bulge in my lower spine (pretty minor) but nothing else. Around this time I admit I became worried about MS after reading about it AND when I got a call from urology asking me to come in to discuss mri results. Ever since that call I’ve had a range of other symptoms develop - tingling in hands, numbness of pinky fingers (only when waking from sleep), vision issues (lack of focus and floaters - was diagnosed with pvd), heavy right leg, some lightheadedness, pins and needles in feet, neck pain and an eye twitch. All these things generally come and go.

I saw a neurologist back in October - he thought it was very unlikely to be anything like MS (and put things down to anxiety) but arranged for a full brain and spine mri anyway ‘to reassure me’ and try to ‘draw a line under things’. Indeed, it did come back as normal. However, I’ve continued to suffer all the symptoms (some only started after the mri time).

I get that anxiety can cause physical symptoms and I was extremely anxious back in the autumn. However I’ve honestly tried hard since then to destress, I’ve been seeing a counsellor and I’ve been focusing on all the happy things in my life like my two little ones. But most days I wake up with numb little fingers or pins and needles in hands (I can shake them off) and I have less sensation in my left fingertips - they feel different to my other hand and this follows a time where my left fingertips had a burning/sensitive feeling for a few weeks.

I’ve seen the neurologist again and once again he seemed unconcerned. He did however arrange for me to have an evoked potentials test as, again, he thought/hoped the results would help to reassure me. Had the test at the end of January and the results have come back as normal.

I’m obviously pleased that nothing ‘sinister’ has shown up and I’m trying to view all of this positively, but I’m still experiencing all sorts of neurological probs. My bladder is all over the place and makes it difficult to go out and about easily. I know I can possibly look in to drugs for this but I’m still breastfeeding so don’t want to take anything quite yet. My vision is still a bit off and in dim light, colours seem to look very bright if that makes any sense, like my contrast is not quite there.

I’d be grateful for any thoughts or support. My full mri was done just a month after the tingling etc started so part of me wonders if it was too early to really detect any damage? My neurologist seems to have effectively closed my case for now and a lumbar puncture wasn’t mentioned… I guess he thinks the other tests being clear is good enough for now. I guess I am just struggling with the worry that it might be MS - as I’m not sure what else it could be?! Blood tests etc have come back as fine and I don’t seem to fit the description for other diseases…

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Hi Aprilshower I’m also new here and stuck in limboland. This not knowing is really rubbish isn’t it. Is it worth going back to your gp to see where you go from here? Sorry I don’t have more suggestions. Hope you get some answers soon. Pen.

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Hello

It sounds to me that MS is completely ruled out as a diagnosis.

The grounds for MS diagnosis are based on the ‘McDonald Criteria’: McDonald criteria | MS Trust You can see from the chart that demyelinating lesions as seen on MRI are the clinical data upon which a diagnosis is based. Without lesions (and having had a full brain and spine scan) you cannot have MS. And the lesions we talk about are in essence, scars from inflammatory attacks. So if you’d had inflammatory attacks, ie the times when you’ve had symptoms, then the lesions would show immediately. In fact, they’d be more evident as current inflammation shows more brightly on MRI scan.

As for where you go from here, has anyone made a suggestion of Functional Neurological Disorder? See https://fndhope.org/

And what came of your appointments with urology? Perhaps you could consider your bladder problems from other neurological issues? You said you don’t want drugs, but there are other options. You used intermittent self catheterisation for a while after the births of your children, perhaps you could continue with that for a while? Maybe the urologist could make some suggestions, such as bladder Botox to prevent any constant urgency issues - but you would have to use ISC in that case.

Has the neurologist completely discharged you? Or is he still working with you to find an answer for your neurological symptoms?

Hopefully you can get some resolution from your problems and just concentrate on your babies.

Best of luck.

Sue

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Thanks so much for your replies, Penelope and Sue.

Yes I have come across FND although the neurologist didn’t mention it to me. It was my GP who first mentioned MS as a possibility when she referred me but the neurologist has always seemed rather dismissive/blasé about that - hope he is right! I guess I have heard that sometimes an mri could be clear and a later one not, but that is not the norm I know.

Sue, I don’t need to ISC at the moment as I’m mostly emptying my bladder and don’t think it would help with the urgency? You’re right that maybe I should view the bladder issues as separate. It’s just hard when you feel as if your body is doing all sorts of weird neurological things! I have some more (physical) tests coming up with urology and I’ll def consider the drugs once I’ve finished breastfeeding in a few months. Would also be interested in Botox injections but yes, have heard that that makes ISC more likely…

Thanks again for the replies, much appreciated.