Going for first Neurology appointment.......

Hi,

Been looking on here for a while, but never posted, but have questions now that I should really have asked a while back.

I’m due to go for my first Neurology appointment in the next few weeks and I’m starting to get confused as to why I’ve been referred as I’ve had MRI scans of both spine and head as requested by rheumatology and have been told that there isn’t any cervical myelopathy or ‘no obvious’ focal myelopathy and this was confirmed by the radiologist.

Would this assessment from the rheumatology department mean i’m basically out of the woods where MS is concerned? If so, why am I having to see a neurologist?

Bit confused and wondered if anyone can shed any light on this.

Ta!

What symptoms have you been experiencing which sent you down the rheumatology route?

Hi, reading your story I know its very worrying. I don’t know if you have had one yet, but I had a Lumbar Puncture before my final diagnosis, which takes up to about six weeks to get the results. But of course everyone’s ms is different so hopefully the neurologist will reassure you and explain everything to you. I would make a list of questions for him/her otherwise you’re bound to forget a couple. Anyway good luck and keep your head held high!

Hi, initially I was diagnosed with arthritis way back in 2013 (sore joints, problems walking). This passed after a year or two and then flared up a few years ago and seemed to calm down.

But recently I’ve had abnormal sensations in my hands, feet and legs (pain, tingling, numbness, numb patches at the base of neck / shoulders, muscle spasms, electric shocks in feet, changed gait, fatigue and waking up with sore muscles as if I’ve run a marathon and now can’t walk). I’ve always put this down to arthritis / rheumatism as it’s come and gone so many times over the years. This time though, its more noticeable.

Both myself and the rheumatologist thought it could be medication side effects. Stopped all medication and nothing changed, so they then ordered the MRI scans to check for trapped nerves / inflammation, which there doesn’t appear to be any of either.

When the results came back, I was told that I should go for a nerve conduction study with a neurologist, but as was told the MRI’s were clear, I’m really unsure why I should be seeing a neurologist as in the past the rheumatology dept have just changed to a different medication, saying the current one isn’t working adn eventually everything passed off.

Ta!

It sounds as if they are doing a broad neurological check. Nerve conduction tests can pick up neurological conditions that don’t show up on an MRI scan - for example things that affect neuromuscular junctions as opposed to central nervous system.

Just hang on in there and let them do the tests! It may rule things out, may make things clearer. I think they are just doing a check to make sure that they have not overlooked something, rather than just assuming it is all due to the arthritis / rheumatism or the meds for them. Looks as if the MRI has ruled out MS, or at least is unlikely. Hopefully this wil be the case with the nerve conduction tests.

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Thanks very much for the replies.

Still hoping that this is an arthritis / rheumatoid thingy and that it’s nothing to do with MS, but as mentioned, got to try and keep a level head as I’m now getting pulse like twitches in my right arm and right leg. Especially in bed at night and when it’s warm . They tend to stop or become less frequent if I throw covers off and get cold (er). Woke up yesterday with my left eyelid ticking and twitching - got worse in the shower and then finally calmed down after an hour or so.

Not had a lumbar puncture and nothing along those lines had been mentioned, but rheumatology haven’t even hinted at what it could be and my GP said that the nerve conduction study should tell us a lot more.

Ta!

B boy can I just ask if your on the NHS? and if so how long has it taken for your appointment for the neurologist from getting the referral from your gp? Was there a long wait for the mri referral from rhumetology?

Thankyou

Hi,

The MRI scans were on the NHS, but luckily i didn’t have to wait too long for them although one of them I had to travel a good 100 miles to get to a hospital for it

I was told by my GP that the Neurology appointment wouldn’t be quick at all, so I took the plunge and signed up for private health care because I wanted to try and get things sorted as I’m getting really confused why I’m getting pointed towards neurology if my previous scans didn’t show anything up.

Mind, rheumatology were only looking for inflammation or trapped nerves in the scans.

Ta!

Thanks for the info mate and hope you get the answers your looking for soon! I’ve been told my neuro will be a while for a wait and that’s before I even get them to refer me for an mri then another appointment back to them! I’m looking at getting a private neuro consult which I’ve been quoted (250 gbp) for and then a referral from
Them for an MRI which is gonna set me back at least 550, I don’t know if they class brain and spine as one section. I’ll have to wait and see I guess at this stage!

Hi,

My appointment came and went and was directed straight to a Nerve Conduction Study in a few weeks time. Didn’t even see a consultant, apparently notes were read and then I was given a new appointment for th study.

Anyone had a Nervce Conduction study before? I’ve resisted reading up on it (via Google) as I’m trying to put everything out of my mind and just let the appointment arrive, so not entirely sure what is involved and what it’ll tell me.

Is the person who’s doing the study someone I should be telling about my symptoms?
Only ask as over the past few days, from everything being relatively calm, fatigue has really crept up on me (to the point where I can’t keep awake at work), tingling and numbness has come back with a vengeance and is spreading again, stupid muscle twitches (can’t control or stop them no matter ho whard i try) along with trembles that make it hard to type or write.

I was given amityptiline (I think it’s called) to try and calm things down, but had it for a few months now without any respite from the things it’s supposed to stop.

Moan over…sorry!

I’ve had nerve conduction tests. Those doing them are technical specialists in them, so whilst they do just go over briefly the symptoms you have been having, they are not general neurologists.

Straightfoward tests, with pads placed on various places, and very small electrical impulses. Those are nothing to worry about. They may also do tests that use very fine needles. However the needles are so fine that you hardly feel them though. They are not like needles they use for injections - much finer, so not even a pin-prick sensation. It took about an hour to do the full lot with me.

I always like to know what I’m likely to expect, so do google, as I prefer the known to the unknown! However, they are likely to send you some information out with the appointment. If you can’t resist the urge to google, then look for NHS information for patients, as that is written for patients, and is clear and informative, and should hopefully reassure you.

Thanks Ziola -I’ll have a read about it. Not bothered about the needles as I’ve had more than my fair share of injections in the past. I used to get regular (every 3-4 months)steroid injections administered by rheumatology which really helped remove any pain, strange feelings and allowed me to walk properly, but they were stopped after a while.

Looks like I’m in for a long journey on this one before I find out what’s going on.