Not diagnosed yet but been referred to neurologist today

Hi I’m being referred to a neurologist today from my gp as she seems lost now as to what is wrong and after a chat today she suspects it’s ms.

For 12 weeks now I’ve had tingling in my lower half with numbness/wet feeling in my knees but over the last 6 weeks ish it is now in my arms and face. I’ve been on every pain relief going and nothing is stopping it plus With my vision it’s as if I’m in a trance all the time. I’ve had neck and lumbar X-rays and an bloods done for nearly everything and they were all fine. I’ve had over 4 weeks ago a lumbar mri and still waiting for results but the doc has said today if I had a herniated docs I would of heard back by now so she has to think of what step to take next. She said for a while she has thought it has been early ms signs but didn’t want to worry me. She now is going to see if I need to go for a brain mri before seeing a neurologist as I could be waiting months for an appointment.

I’m scared but unsure what to think at the moment.

Thanks any advice would be very grateful.

Rachael. From experience, if you can possibly afford a private mri brain, then I would do that. Ask gp for a referral letter. Once you have that report it will be easier to know what you’re dealing with and possibly better for your gp to guide you. Good luck.

Hi thanks for the reply. My mum offered to pay to go private for the whole thing. Would it just be a brain scan or a full spinal one aswell? And would you by any chance know how much I may be looking at. X

Discuss this with your gp. I’m sure he/she could request a Brain and Cervical spine scan. (or the brain scan may probably include enough of the cervical spine anyway).

Mine was a brain scan which included enough “evidence” of the cervical spine too. I’m in the republic of Ireland and it cost me €200. For me it was worth it as the report was read by my Neuro two days later. Just bear in mind it may still be inconclusive, but I would still want it done myself.

Just a quick update but still unsure as to what this all means. well I saw the neurologist and I’ve just received his letter to my doctor. He has written:

possible central nervous system demyelination
Plan brain and full spine mri.

Also cutting it short as it is a long letter it says there is a possibility basically it could be a viral infection that has effected the spinal cord.
Her cheeks remain tingly and the arms although this is a ulnar nerve distribution and I suspect may be a red herring.
I do not have symptoms suggestive of L’hermittes phenomena and there is no history of uhtoffs phenomenon either.
There is no history suggested of optic neuritis.
On examination assessment was completely normal. Her pupils were equal and reactive to light. Her right disc appeared a little paler then the left although she has a mild cataract on her left ( congenital) lower cranial nerves were normal. Power was grade 5. She does have very brisk reflexes throughout but finger jerks were not present. Hoffmans sign was negative.

Her right plantar was mute but the left plantar was flexor. There was no objective sensory signs other then a classical ulnar nerve problem at the elbows although tinels test was negative.

I agree in this situation we need to consider central nervous system demyelination. It is reassuring that the examination is relatively normal I am uncertain of the significance of the slightly paler right optic disc and brisk reflexes.

If there is evidence of inflammation I wouldn’t recommend and specific treatment at present as her symptoms have now been with her over 3 months and she hasn’t deteriorated.

If the scanning does show and abnormalities this would not confirm multiple sclerosis as by definition an individual with multiple sclerosis has to either experience a second episode or progressive white matter changes in serial mr scans. I have thus categorically informed her she does not have ms at the present time.

Any ideas how this sounds :confused: thanks for reading.

Hi Rachel

It actually sounds very much like my first MS relapse, almost 20 years ago. I was also categorically told I did not have MS. At the time, there were little or no DMDs available, so a finding of potential MS would have been useless. I actually didn’t get a copy of a letter like yours until much later when I asked to see a copy of the original neurologists letter to my GP, it read something like the letter you’ve had sent to your GP.

However, strictly speaking, the neurologist is right, to be diagnosed with MS, you either have to have more than one occurrence (or relapse) or progressive white matter changes.

So, as I lived in the age before the Internet was freely available, I just took their word for it and went about my life for 5 years, I had what I later discovered were quite a few relapses, but managed to ignore them and just lived through it until I finally couldn’t ignore a bad relapse 5 years later when I was diagnosed with MS.

Given that the world is a different place today, you won’t be left adrift for that long. It sounds like they are not able to definitively diagnose MS, but instead are suggesting it’s possibly a one off occurrence, maybe due to a virus. In which case, you’d assume that the symptoms would gradually get better and there would be no reoccurrence.

However, if you find that your symptoms show no recovery, or if they just get worse, or if you have recovery then a reoccurrence of symptoms, or new symptoms develop, then you should definitely get seen by a neurologist again. It might help to start keeping some kind of health diary so you can actually keep track yourself of how you are now and what happens as time goes by. Otherwise, you just forget what ‘normal’ feels like, because your new ‘normal’ is actually abnormal but you just don’t notice.

I hope some of this is helpful to you.


Thanks for you reply. I do think I have found a good neurologist. My mum paid for a private one who just so happens to have a clinic within the nhs so he’s referring me back through the nhs for the mri scans. It has been very helpful to hear what you have said thank you.

Hi guys well I had the mri so just a waiting game now. One strange thing did happen towards the end and I assume it’s because I knew I had to just stay still for so long I did have my hands on my belly but my fingers and for arms became numb to the point I had to move them then the pins and needles kicked in and because they put a wedge under my legs my feet went abit numb too. During the mri I kept getting a strange feeling like I was moving but I wasn’t :confused: then to top it off I got off the bed n nearly keeled over I was really woozy x