Newly diagnosed and feeling a bit lost


I was diagnosed last week with MS. It wasn’t a surprise as I’d suspected it for couple of years after I lost sensation from hip to toes both legs. Initially cauda equina was suspected but it wasn’t and was just told to go back if it happened again. Not long after that my thumb and finger lost sensation and still have. Finally went to my gp about that and the restless leg I’d been having last couple of years. He referred me to neurologist, neurologist said it was carpal tunnel and restless leg was to do with my back. When I mentioned I’d lost sensation from hip to toes previously he requested brain and neck mri. Had that in dec.

Last month I went numb down below and again cauda equina was suspected and sent to a&e. They looked at my mri and asked if anyone had spoken to me. After being transferred to another hospital I was asked again if anyone had spoken to me about my mri, at that point I said I beginning to suspect it’s showing something. The dr then told me I had demylination in the brain and on my neck and they want to get the rest of my back scanned. It wasn’t cauda equina. The new scan has shown lesions further down my back. Last week when I saw the neurologist he muttered I have Ms Followed by I need a lumber puncture then back to him in 3mths to start medication. If I go numb again to contact the local MS nurse.

Now I feel lost! What now? I’ve been given the diagnosis and left to it for a few months. I have so many little health niggles that I’ve been ignoring (too difficult getting dr appts as I work full time and didnt want to called a hyperchondriac yet now wondering if it’s associated with the MS.

Will the neurologist ask the MS nurse to contact me, should I contact her myself?

Work and family have been great but it’s not the same as someone who has extensive knowledge

Hi Pauline

Your story is almost identical to my own. I had a hospital admission in October with suspected cauda equina, had a lower spine scan which ruled this out. Then had brain and neck scan in December, went back to see a spinal surgeon who told me I had MS and he couldn’t help and I would need to see a neurologist. I am still waiting for an appointment and I actually rang them yesterday to be told they haven’t received the referral and when they do it will be at least 11 weeks before anyone can see me. My symptoms are getting worse, leg and foot numbness, blurred vision, twitching in my eye and lip. My GP says she can’t help and I, like you, feel very lost and very anxious. From research on the internet it would seem that a course of steroids may help but my GP won’t prescribe anything and I am worried that the longer it goes on the chance of a full remission decreases

Hi Pauline, the good thing is that you have a definite diagnosis, so now you should soon be able to start treatment. If I was you I’d ring the MS nurse now anyway, she/he could maybe answer some of your questions, & nobody will think you’re a hypochondriac.

What your neuro has said is pretty much how it goes, I think a lot of them need a refresher course on their bedside manner! I know 3mths sounds a long time to wait, but if you’re to have a LP the results need to be with the neuro when he next sees you.

Speak to the MS nurse & hopefully she’ll talk you through what will happen…but try hard not to worry, easier said than done I know! Keep chatting on here, there’s always someone to listen

Rosina x

Hi, Lobster I hope your neuro appt comes soon. Fortunately my neuro appt was booked, it just so happened I went numb 2 weeks prior so that was a short time to wait although felt like forever. I can’t describe the relief I felt once I saw him, strange as it sounds. Just to know that I haven’t been imagining things! Rosina, thank you for your reply. I think I will make contact. At least I’ll feel like I’m being proactive. Received my next neuro appt today, middle of may so for now I’ll enjoy not having to take any medication :slight_smile: