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Help with symptoms

Hi. I’m newly registered to the forums but have been reading a while. I am having neurological symptoms and ms was suspected but I have had a clear head MRI. My GP now says it’s unspecified neuritis, probably viral, and I just need to wait it out for symptoms to clear. We are waiting for a response from the neurologist to the clear MRI but he is on holiday at the moment. Symptoms started 11 weeks ago with ‘dizziness’, a sense of the world not keeping up, difficulties focussing on different depths, vision bobbing when I walk, this sensation is absolutely constant, has never got better or worse and is the hardest to live with, it’s exhausting. A few weeks after that started, my left hand started tingling, over a couple of weeks the tingling spread to both feet and my right arm too, my right leg is slightly weak and I get numb toes when I walk. The tingling has continued but the intensity varies, worse when I’m hot, tired etc. Then yesterday on a flight, I experienced trigeminal neuralgia in my left forehead, excruciating, this seems to have eased today, I hope never to feel that again! I’m posting here as I can’t find anything other than ms that links my symptoms. I was so affected that I saw a neurologist privately (all physical tests normal) and paid for the mri. I worry now that I was too quick, the mri would have been 9 weeks after the start of symptoms, is this too soon and is it possible that lesions wouldn’t be big enough to show? Or do symptoms mean that lesions would always be visible if it were ms? I don’t want to wish it on myself but I don’t want to have it and it to be missed. Plus I would really like to know why I feel like this! Also, my initial ‘dizzy’ symptom began after a flight and the neuralgia happened yesterday on a flight. Can air pressure changes affect symptoms or is there another neurological condition triggered by flying?? I Really hoping that the breadth of experience here can help point me in the right direction of where to start thinking about going next…

Hi Leo

I think if there were going to be lesions related to MS, or even a clinically isolated syndrome (CIS), then they would have sown up on the MRI.

However, your GP cannot either diagnose MS nor state categorically what it is not. S/he is not a neurologist and that is who you nee to read the MRI scan and tell you what they think has caused your symptoms.

I’m afraid that no one on this site can tell you anything else that might, or might not, be causing your symptoms. It really is a case of see a neurologist and get their opinion.

By the way, I’ve never heard of a diagnosis of ‘unspecified neuritis, possibly viral’. I’m wondering if your GP is trying hard to give you answers, possibly because you are in need of them, but actually these answers might be a tad meaningless.

You’ve said that you paid for the neurological consultation and MRI. Has your GP also referred you to an NHS neurologist? That would be a usual response from an NHS GP. If you then find the waiting time for an appointment is too long, then get and pay for private neurological diagnostic processes, before perhaps being referred back to the NHS.

I suggest you ask your GP to refer you to an NHS neurologist whilst you are waiting for the private neuro to come and give you more feedback. It just doesn’t seem like you’re actually getting anywhere with your GP.

Sue

Thanks for your reply sue. The GP did refer me to an NHS neurologist but I seem to have been knocked off again by going private, I will chase this again but am hoping the neuro I saw will put me onto his NHS list so am just waiting to see what he says. I am unhappy with the diagnosis as it is very much they have ruled out what it’s not (also had clear blood tests) and have no answers therefore it must be viral!! As that leaves me with no options in terms of treatment and I feel so rubbish, I would just like to make sure I’ve turned over every possible stone. Thank you for your reassurance over the mri too.

hi leo

ms is very much a matter of ruling out other possibilities.

that what makes diagnosis so difficult.

whatever the outcome, if it’s NOT ms, congratulations go out and celebrate.

be your own advocate and insist on being referred to experts in other fields so that you can get treatment.

be strong

carole x

Thank you Carole, I am certainly glad to be in the position where ms is unlikely although not knowing what I am dealing with at this moment is a mental minefield. I must be stronger with the GP, you’re right.