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Hello @Ivy my sympathies to you. You mentioned that you had a diagnosis of FND. Does this not explain all your symptoms and the worsening after infections?
Also, are you getting NHS support in dealing with your symptoms?
Hello,
That sounds like an incredibly difficult and frustrating experience, both in terms of symptoms and then the search for answers.
The thing is, on this forum, people know about their own MS symptoms but not about anything else, so we might be a bit biased. You can look at a list of MS symptoms and think, well, quite a few of these match. But then the same symptoms often all match other things, including other neurological problems. MS is hard to diagnose.
But you have had two MRIs, if I’ve understood rightly. One showed some lesions that they said were not MS typical. The second seems to have been completely clear - is that right? When the neurologist suggested FND, did s/he say why that conclusion was reached? Did they say why they don’t think it is MS? Because to me you seem to have reasonable questions that really need to be answered by a neurologist, perhaps one specialising in MS - if that hasn’t already happened.
I also wondered whether you have been given any treatment. If it’s FND, what can they do about that? Can they at least help you with pain, for example? I’d have thought even a GP might prescribe something for that - they don’t always need a final diagnosis.
Hi Ivy, welcome to the community. I’m so sorry to hear everything you’ve been going through, especially over such a long period of time. It sounds incredibly frustrating and exhausting to have recurring symptoms for years without getting clear answers.
While nobody here can tell you what the cause is, some of the symptoms you’ve described – episodes of weakness, fatigue, bladder issues, sensory symptoms, double vision, and the electric shock sensation down your neck and leg when sneezing – do sound significant and deserving of further investigation rather than simply being dismissed.
Many people with neurological conditions, including MS and other disorders, have experienced long diagnostic journeys and periods where tests were inconclusive or symptoms didn’t fit neatly into one diagnosis. It’s also possible for symptoms to overlap with other conditions, so keeping an open mind is important.
Given that your symptoms have changed and worsened again, particularly the persistent double vision and new electric shock sensations, it may be worth seeking another neurological opinion or asking for a review, especially since these symptoms are impacting your daily life so significantly.
In terms of coping, many people find it helpful to:
• Pace activities and avoid pushing through severe fatigue.
• Keep a detailed symptom diary, noting when symptoms worsen, any infections, heat sensitivity, or triggers.
• Gather copies of previous MRI reports and test results for future consultations.
• Seek support from family, friends, counselling services, or support groups, as living with uncertainty can be emotionally draining.
Most importantly, please don’t lose hope. Many people spend years searching for answers before eventually receiving a diagnosis or finding treatments that help manage their symptoms. You deserve to be listened to and taken seriously.
Sending you lots of support. Please be kind to yourself – you’ve already shown incredible strength by continuing to work, rehabilitate yourself, and keep advocating for your health despite everything you’ve been through. I hope you get some answers and relief soon. 