Clonus test

[chocaholic38]

Have been back and forth to GP for nearly 2 years, with numbness, altered sensation on the right hand side of my body. Random nerve pains etc.
I was referred to neurology in September 2024 and still waiting. So have an appointment next week with a private neurologist, as I can’t wait any longer.
Decided to try a private physio last week to see if they could find anything, they done what they said was a clonus test which they said was evidence there was something wrong with my nervous system, has anyone any knowledge of this test? He mentioned MS which my GP has also mentioned.

Hi OP, I'm afraid I can't answer your question about clonus. I've also been referred to neurology (in August last year) and still waiting so have also decided to go privately. Will be seen by private neurologist at end of December - so it seems demand is high!

I wondered if you'd had your appointment yet, and how that went.

MS has been mentioned to me as well - I first went to GP with strange sensations in feet - painful tingling and numbness. Have a range of other symptoms which have come and gone over the years.

Hi, yes I had my appointment on Tuesday night, unfortunately I feel like it was a waste of time. I was in and out in 20 minutes and was told he thinks I have fibromyalgia.
He dismissed the clonus, even though both nhs physio and private physio mentioned it.
Was told i will be given medication to take dailly and that was the end of the appointment.. But after researching i dont feel my symptoms fit. So not sure where i can go from here.

Oh, that is rubbish. I didn't ask how long my private appointment would last but I would expect longer than that!

Are you still on the waiting list for the NHS neurologist?

I joined a Facebook group for women with MS, and endless visits to GPs etc before finally getting a diagnosis does seem to be not uncommon. One of the women in that group suggested going back to GP and asking to be referred for MRI - which I suppose by-passes the neurologist. Maybe you could try that. And just keep going back every time you experience symptoms.

And I suppose there is a chance that the medication prescribed will have a positive impact.

Yes I thought it would be a bit longer than 20 minutes as well. Had a Bupa GP appointment this morning to discuss what the neurologist had said, went round in circles with them as I disagree with his diagnosis. Now they want to send me to get my lower back checked. I asked if it would be worthwhile going to rheumatology but her words were they don’t deal with numbness but everything I read says that’s who diagnoses fibromyalgia. 🤷‍♀️
i have kept my nhs appointment but as you know yourself that’s a really long wait. Hopefully you get a better neurologist than I had 🤞🏻

In the early 80's I was told my random weird sensations on one side of my body was Shingles, despite there never being a rash.

I was told I had MS in the late 80s when I went blind in one eye for a few months. The neuro didn't want to put me through a lumbar puncture as my symptoms hadn't been too bad. I was told to go home and live my life until it got worse.

I returned to the GP in the early 2000s with more symptoms and was told I was depressed and put on antidepressants. I carried on visiting the GP, getting worse and worse and was told I had Fibromyalgia in 2009.

One doctor has written "difficult patient" in my notes as I kept going back for help.

I self-referred to the local hospital physio in 2017 after having difficulties with one leg. The physio immediately suggested MS so I told her I'd already been diagnosed. She sent me on to another neurologist straight away where I was tested for a B12 deficiency. My levels were higher than normal range.

A year later I finally had a lumbar puncture and a diagnosis of MS. I was then told it was too late for the medications they normally give for RRMS.

Definitely push for MRI and OCT if you've had any eye issues such as faded colours (mine comes and goes). A visual evoked potential test can also be given.

I had clonus for decades but it disappeared a decade ago. Keep pushing for tests, but a really simple one to do yourself is the Babinski plantar reflex test. I've been positive for this since I was a kid and thought it normal (older brothers who'd hold me down and "tickle" me), as my brothers had the negative response.

Good luck to everyone looking for answers.

@Itdoesntendwellatallthe treatment for RRMS has moved on massively in the last few years. Might be worth re investigating treatment options. I had my last treatment 10
years ago. I’ve recently relapsed and been given more options than were available then.