Looking for advice for ms neurologist /specialist

New diagnosis and before diagnosis
1

Looking for advice on neurologist / MS specialist

Hi everyone, I’m hoping for some advice from people who have been through a similar situation.

I have been experiencing neurological symptoms for several years, including episodes of left-sided weakness and numbness affecting my arm and leg, balance problems and veering to the left when walking. I have fallen four times and the fifth just over teo weeks ago sometimes bang into walls and doorways.

On examination I have had a left-sided pronator drift, reduced power in my left arm and leg, positive Romberg with swaying to the left, and nystagmus on left lateral gaze.

I have also had visual symptoms, including an episode of temporary loss of vision in both eyes lasting minutes, as well as blurred vision and white flashes.

I also get involuntary episodes with my right arm while resting. The arm can suddenly lift or flick, and my hand can clench with my thumb pulled into my palm. Other people have witnessed this happening.

I have had an MRI of my brain which reported mild chronic ischaemic white matter changes but no intracranial mass. I have also had a whole-spine MRI showing cervical narrowing/stenosis and degenerative changes. Nerve conduction studies did not show generalised peripheral neuropathy, although there was possible left common peroneal nerve compression.

I have also been assessed by rheumatology, who found osteoarthritis and fibromyalgia, but no evidence of inflammatory autoimmune arthritis.

I have been told I may need to wait around 14 months to see neurology, and I am now being considered for a new referral to Nottingham.

I’m not asking anyone to diagnose me, but I would really appreciate advice from anyone who has experience of MS/could this be what ibhais and do they know of neurology in this area.

Has anyone had a good neurologist or MS specialist in Nottingham or the surrounding area that they would recommend?
Have you had experience of being referred there, and was there a particular neurologist or MS service you found helpful?

I would be very grateful for any recommendations or experiences. Thank you.D

1 Like
2

It sounds like you’ve been dealing with a lot, and I can understand why the long neurology waiting time is worrying, especially with the falls and changes in strength and balance.

I wouldn’t try to diagnose this from a forum, as several neurological and spinal conditions can cause overlapping symptoms. The MRI findings and examination results need to be considered together by a neurologist, and a brain MRI without typical MS findings does not by itself answer every question.

If you’re being referred to Nottingham, it may be worth asking your GP or current team whether the referral can be marked as urgent given the ongoing weakness, falls, visual symptoms and involuntary movements. You could also ask whether there is a cancellation list or another local neurology service with a shorter waiting time.

In the meantime, keeping a simple symptom diary could be useful. Record when symptoms occur, how long they last, which side is affected, any falls, vision changes, and whether anything seems to trigger or improve them. Taking this information to the appointment may make it easier for the neurologist to understand the pattern.

If you develop sudden new weakness or numbness, facial drooping, difficulty speaking, sudden loss of vision, severe new headache, or another rapidly developing neurological symptom, seek urgent medical assessment rather than waiting for the routine appointment.

I hope you get a specialist assessment sooner and, importantly, some clearer answers about what is causing these symptoms.