Hi, I have just joined. I have an appointment with a private neurologist next week, have been on a waiting list from September 2024 with the nhs and unfortunately I think I will be waiting for a while yet.. My GP suspects ms, I had a brain and cervical spine mri in March and according to the GP they are clear. So was told to wait for my appointment with neurology. I have had ongoing numbness, altered sensation down my right hand side, random nerve pain in legs and arms, plus lots more symptoms since feb 2024. I decided to go to a physio last week to rule out anything muscular, he mentioned he had done a clonus test which indicated there was an issue with my nervous system, and ms was mentioned. Can anyone with knowledge of this test help please?
Short answer: don’t know. But I think it’s part of the neurology exam when they sit you on a couch and do weird things… tap you with little hammers, scratch your foot. I think clonus has to do with involuntary spasms, so perhaps it suggests a problem with “motor” neurones, the ones that control movement.
Your private neuro should give you a full physical exam. And a proper explanation of the whole clonus thing.
Will your private neuro have access to your NHS scans? I’ve found getting scans from A to B can be quite a job, but worth checking. Perhaps contact the secretary, with your NHS number, to check.
You could also take a list of questions, listed in some sort of logical order (e.g. order of priority). Be prepared that you might not get a diagnosis there and then, but at least a clearer idea of what the thinking is and what is required to get to a diagnosis. They may want another MRI, for example - in which case you can point out how long you have been waiting and ask about timescale.
I have clonus which affects my legs and was really obvious to me when I first saw my neurologist and he ran a series of tests; he had me lie down and was raising my leg and positioning the knee, my lower leg started wobbling back and forward as my muscles rhythmically contracted and relaxed. This is clonus. It’s seen in conditions like MS that affect motor neurones in the brain or spinal cord. It isn’t just seen in MS though so it doesn’t mean you definitely have it, especially if your brain and spine MRI are clear.
Sorry to hear you’re having to wait so long to be seen by a neurologist. I can sympathise as I waited nearly a year to be seen, it’s a horrible wait. Maybe talk to your GP again and see if there’s anything they can do to speed things up, re probably isn’t.
Take care x
In my personal recent experience this has got a lot easier than it used to be 25 years ago when I last had occasion to find out. The consultant’s private sec should be able to arrange for the NHS scans to be available for the boss to see as long as he/she knows about them in advance.
Thank you for the reply, i think the test the physio performed was on my ankle, so that makes sense.
I have been back and forth to the gp since feb2024 so it has been a long wait, I have been made to feel like it’s all in my head, the mri was of my brain and cervical spine. But the physio thinks I need one on my lower back so hopefully that’s something the neurologist will request.
To be honest regarding my gp, I don’t have much faith in them so haven’t been back to them since March as their answer is to just give me nerve tablets which didn’t help.
My B12 was borderline low, so I was started on loading injections but the nurse gave me an injection then took bloods so my b12 tested high so they stopped them. So I have been treating myself since February but symptoms are still there.
Hopefully I will get some sort of answer soon. Thanks again.
In my experience you do have to be quite persistent in your dealings with your gp @staceym . Even pushy, albeit as calm and diplomatic as it’s possible to be. It took me years to realise that. I used to be quite reserved in dealing with my gp. Nowadays my only problem is getting past those Rottweiler’s on reception duties! Get past them and you’re home and dry! Almost. I don’t think that they routinely do a full MRI scan now. Tends to be brain and neck only. Wishing you well and hopefully you’ll be able to persuade either your gp or consultant to do a full MRI scan, because it’s just possible any lesions are low down on your spine.