Feeling alone and not sure what to do next

New diagnosis and before diagnosis
, ,
1

Hi everyone,

Bit of background, I’ve had odd symptoms for the past few years starting with numb, tingling face, arm going dead and unable to pick things up. I was diagnosed with migraines and potentially carpal tunnel syndrome.

Since then I’ve experience these symptoms and also developed new ones. Balance issues, vertigo, tremors, visual issues, speech issues, cognitive issues such as forgetting now to use a knife and fork. Last year my GP arranged for me to have heart tests to investigate the dizziness, vertigo but nothing came back.

I was referred to a neurologist in July 2022 who initially rejected the referral saying that NICE guidelines state that anyone under 50 with a tremor won’t be seen or something along those lines. At this point I have stopped working and my husband now helps me look after my children.

I saw a private neurologist in October 2022 who have me a probably diagnosis of migraines with functional overlay symptoms but arranged a brain and spinal MRI to rule out ms. I had this MRI in December but nobody has gone through the scan with me and I have questions. The MRI was only done of my brain and not spine.

Fast forward to December 2022 I had an NHS appointment with a neurologist via what’s app video call. It was awful, the signal was dropping, the Neurological exam seemed near impossible. Anyway this neurologist agreed with the probably migraine diagnosis with functional overlay symptoms and this is the last contact I’ve had with neurology.

I feel so alone and unsupported, I feel like MS isn’t being ruled out and I just need to know if I had it or not. I’m frustrated about the neurologists focusing on migraines as I have had these most of my life but never with any of these neurological symptoms.

I’m sorry for the essay but I’m hoping you all understand. Thank you

P.s. I have no MRI knowledge but was given the discs to pass onto other medics I see so I had a look and there’s so much white on it that I just want an explanation of what the scan shows. The report I got is one sentence saying I should be reassured.

2

It is very difficult when you have symptoms and no diagnosis, so no explanation of what might be going on. MRI scans of normal brains do have lots of white on them. Did the NHS neurologist get to see the MRI scans? Were they done through the NHS? If both have looked at the MRI scan and both think it is reassuring then I’d go with that, and not worry about it being MS.

Unfortunately if there is no clearcut diagnosis, and this is quite often the case with neurological symptoms, then it feels as if we are on our own. It can often take many years to get to a diagnosis.