Going round in circles

Hi all,
I first registered on the forum in 2019 after having optic neuritis in 2014 and was given a diagnosis of CIS and evidence of a few brain lesions so was added to a watch list. I haven’t seen my neuro for 2 years (COVID) but have developed other strange symptoms.
Crazy fatigue that comes on but only lasts an hour or so (embarrassing at work as I can’t keep my eyes open sometimes). I lose words when speaking or jumble them up. Awful tinnitus. Pins and needles all over and sometimes in my face which is terribly unpleasant. The latest one was both my hands had gone numb and weak. My GP said carpal tunnel and sent me for nerve conduction tests which came back normal so they told me to take it up with my neuro. I suffer regular migraines andI I also have back problems (herniated discs) so I’m under another consultant for that. I complained to them that my legs go weak and have pins and needles etc and they also told me to take it up with my neurologist.

Trouble is I can’t get I to see them.

Feel like I’m being passed from pillar to post.

With all these going on I feel like a hypochondriac

Perhaps talk to your GP for advice on how best to expedite an appointment with your neurologist.

I have called them, I have to wait 3 weeks for a phone appointment with my GP to discuss it.

I had an MRI a couple weeks ago and now I have an appt with the neurologist in 2 weeks as they want to see me face to face.

My GP dismissed me and said I need to speak with the neuro so no help from them.

Hopefully I can get some answers when I see them.

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That sounds a bit more like it. I am glad that you have made some progress. Waiting for appointments is no fun, but at least things are heading in the right direction and your concerns are being taken seriously.

Anyone ever had their vision shake side to side? It’s a new one on me and it wasn’t pleasant, thankfully it only lasted an hour or so.

Another thing to add to the list I suppose?

Could be something called nystagmus, I had an episode which was awful but only lasted minutes thank goodness.

Might be worth mentioning to your GP or getting an eye test just to be sure there’s nothing else going on?

Hope you feel better and get answers soon x

I had nystagmus just before Christmas. Was very unsettling when it first appeared knocking my balance out of kilter. Lasted long enough for my MS nurse to observe and confirm as an MS symptom and give me my Relapse Badge for Christmas. Resolved itself without resorting to steroids. There was concern about steroids reducing resistance to COVID infection (we were expecting family from London).

Thanks both, it’s a fairly common thing then?

I’m just glad it was a short episode.

I’ll be sure to mention it to the neurologist in my next appointment.

No new lesions in the past 2 years so a diagnosis of fibromyalgia. Still under the care of the neuro due to the optic neuritis.

It’s a relief to at least be able to put a label on what’s going on and that I’m not going crazy.

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Thank you for letting us know how you’ve got on.

‘No new lesions’ is never going to be as good as ‘no lesions in the first place’, but it’s better than it might have been and I hope that you feel this is a reasonable result.

Thanks Alison,

Yes it’s such a relief to have no new lesions but also still feel like I’m in limbo.

After spending the last couple of weeks reading about fibromyalgia and how it’s diagnosed I’m more confused. I don’t have the “hallmark” symptoms of pain or IBS. I do have fatigue, headaches and pins and needles which are common symptoms but also have vision problems and weakness which apparently are unrelated?
I’ve also been offered no support, I left the consultant office and have been left to fend for myself.

Has anyone else here been diagnosed with fibromyalgia?

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Hello, hope everyone is well (as they can be).

I’ve been referred back to neurology by my GP due to another bout of numbness and weakness in my hands. They tested my b12 levels due to a positive Romberg sign which came back fine so they have said I need to see neurology again.

Feel like I’m constantly on a hamster wheel getting nowhere.

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Went to see a neurosurgeon recently about herniated discs in my back. While they’re causing pain and discomfort it was said that the physicality of them wouldn’t cause the numbness, pins and needles and lack of coordination I’m experiencing and he asked if I had any other symptoms, I told him about my history etc and he asked if I had MS I said no, he said I need to press neurology for an answer.

It was disheartening to hear that my symptoms couldn’t be resolved with surgery (but also a relief). That’s the 3rd medical professional to ask me that question. Don’t get me wrong, I absolutely don’t want to have MS, I just want an answer so I know what I’m dealing with and can move on.


So I’m now being sent for more nerve conduction studies to rule out peripheral neuropathy.

Has anyone had these tests done?

There is one thing, I’m getting to visit a lot of different hospitals on this journey.

Hope everyone is well…

I had the nerve conduction study and it was good news.
I don’t have peripheral neuropathy. Huge relief.

Still no closer to what’s going on, but I’m taking as positive news.

Hopefully I’ll get a follow up appt with the neurologist soon to discuss what’s next.

Hello again…

Still waiting for a neurologist appointment.

In the meantime I have another weird symptom.

When turning my head in a certain way I get what can only be described as a lightning bolt in the back of my head and behind my eye. It’s only brief, but the pain is awful.

Anyone had any similar experiences?

Update: diagnosed with trigeminal neuralgia and again told to chase up the neurologist.

I guess that I will have to be on the phone to them weekly until they see me.

Can anyone recommend a private neurologist in the north west?

The wai time has jumped to 56 weeks due to staffing issues. I get that the NHS is struggling but I can’t wait a year with symptoms getting progressively worse. Trigeminal neuralgia is horrendously painful and while now seems to be under control with medication I would like to be seen to put my mind at rest.
Please PM if reluctant to post here. Thank you

I saw my Neurologist Dr Sharaf privately.
After my first MRI found multiple lesions on my brain and c spine he transferred me to his NHS list.
He works at Salford Royal and Fairfield Hospital.
I saw him privately at Highfield Hospital in Rochdale.
I definitely think it’s worth getting the ball rolling by seeing a Neurologist privately in the first instance due to the long waiting lists.

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Thank you, I will look him up