Concern about progressing symptoms

New diagnosis and before diagnosis
1

Hi everyone,

This is my first post here and I should say I haven’t been diagnosed with MS, but am waiting to see a neurologist next month. I know no-one can answer my question really, but I’m hoping to here some ‘positive’ stories from others. Last December I had the start of some MS-like symptoms (numbness in one foot and a burning type sensation in one hand). I was tested for carpal tunnel and referred to a physio under suspicion of irritated nerves. The symptoms came and went and I thought I was making progress.

Around six weeks ago I had a migraine (my first in almost four years) and since then I feel like my MS-like symptoms have accelerated. I’ve had the whole range and they come and go - sometimes it could be a few minutes of numbness or a visual disturbance, sometimes hours. Rarely longer. They haven’t impacted my day to day life physically, but obviously emotionally it’s a very difficult time.

I have been ‘coping’ with a possible diagnosis by focussing on being on the more ‘positive’ signs of the statistics - that possibly I’ll be diagnosed with RRMS. I’m 39, have two children and have been looking at it as a thing I have to cope with, come bad days or good. However, I’m starting to get really concerned that I’m having this ‘bubbling’ of a whole variety of symptoms - every day there is something, but they come and go.

I’m now getting really concerned that this could indicate it is progressive - it’s not just one symptom showing up for a while and then remitting. I know no-one can answer this definitively and it’s all unpredictable, but I’d be reassured to hear from others that had a similar bubbling of perhaps early symptoms then a RRMS diagnosis.

Thanks.

2

Hello

MS symptoms don’t usually come and go that rapidly. Generally, an MS symptom will last at least a day, more likely longer. So you might be focused on the wrong diagnosis.

Or not.

Prejudging your symptoms prior to seeing a neurologist, having any tests and hearing from him/her what the diagnosis, isn’t really a good idea. You may have something totally different causing the symptoms. This is one of the problems with MS, so many of our symptoms are also shared with other diagnoses.

It is perhaps a good idea to start writing a diary, or a timeline. Think back as far as you can, write down your symptoms, when they occurred and how long they lasted for. Try to keep this diary up until you see the neurologist next month and you’ll have some useful data to talk to the doctor about.

My own MS began with a numb finger, that became numb feet and legs. After a course of steroids, the numbness gradually wore off, but not completely. I never really felt my feet again properly after that first relapse. But our bodies are quite clever really, they compensate for damaged nerves, so you end up with a ‘new normal’. But all of my relapses have involved symptoms that have lasted a minimum of about a month. I’ve has MS for 22+ years now and am now in a progressive relapsing stage.

Best of luck.

Sue

3

Thanks Sue, I appreciate you taking the time to reply with such sense! I have been trying to avoid the dreaded over-Googling and thinking but sometimes panic sets in and then of course is exacerbated by what you read online. Anyway, I’m going to try and continue to stay positive whatever happens. Thanks for your well wishes and best wishes to you too.