Forum

Pre-diagnosis

Hi All,

I hope you are all well, and your Monday mornings are ok! I’m writing while sitting at my desk at work. Not quite as focused as I should be perhaps! I’m currently struggling with the worry of a potential MS diagnosis, which I realise may seem silly - worrying about something that may actually be fine. I went to my doctor just over a week ago concerned about numbness that started in my right leg and travelled to the back of my thigh, and then down my right hand (little finger) down to my elbow. It seemed to spread also to my face, but I’m quite an anxious person so thought it may be that. The GP started to talk about MS straight-away, which I thought was a bit alarmist. We then did blood tests which have come back clear. I have an appointment booked on Friday where I will be referred to a neurologist. In the mean time, my leg and arm have gone back to normal, but I have numbness in my tongue, it’s subtle, but I noticed it yesterday when I couldn’t feel a cold drink in my mouth.

I’m generally going between panic and total calm thinking I’m over-reacting. My worry is that my aunt had MS, and unfortunately is no longer with us. I can’t help thinking of this, and am currently feeling incredibly anxious. Work is very busy at the moment and I’m struggling to focus, which kind of compounds the anxiety.

I’m not sure what I hope to gain by writing here, but would appreciate some advice or support from those who have gone through similar. My partner knows what is going on, but I don’t want to worry him too much.

Thanks for listening to/reading my ramblings,

Best wishe,

Nicole

Hi Nicole, sorry you’re feeling anxious. It’s good that you’re going to be referred to a neuro, as he’s the only one that can give you a proper diagnosis. MS is extremely difficult to diagnose & you’ll be asked to have various tests done which maybe will tell the neuro more about what’s happening to you. It’s good to keep a note of any symptoms so they can be referred to later, if needed. As I said, MS is difficult, so be prepared for a long wait before the neuro can be sure.

Try not to worry, good luck

Rosina x

Hi Nicole,

My thoughts are try not to worry until you have something to worry about. It is not easy being in limbo land as so many thoughts go through your head and I strongly advise you not to troll the web what you describe could be caused by many things.

When you start getting stressed out, do some breathing exercises, you’ll be amazed at how it calms you down. It’s take a deep breath and let it out slowly, it also helps when you feel pain.

Wishing you all best wishes

Janet

x

Hi Nicole

It’s not silly at all to worry. Unfortunately, we humans are very good at it. Try not to go into to full blown panic mode though, because that will not help your situation. You mention that, you don’t want to worry your partner…is this a new relationship.? I am sure he will want to be there for you, so do let him support you. The partner, sometimes worries more if they are kept out of the picture.

At least you will be seeing the Neurologist soon. Hopefully he/she will arrange an MRI scan if that seems appropriate and do some other routine tests.

I hope it’s been helpful sharing your thoughts on here.

Take care and keep chatting with us

xx

Hi all,

I just wanted to say thank you for your messages, it is truly a comfort to be able to reach out and get a response. I feel much better now, and it is absolutely right to say not to worry until there is something concrete to worry about. In many ways there are positives to this, if my symptoms turn out to be more serious than you’d hope or if they turn out to be nothing much, it puts other general life worries and niggles into perspective - which is a feeling I hope will last!!

In the mean time I should get my referral to the neurologist tomorrow morning and will go from there,

Thanks again for your kindness,

Nicole

Worry is useful when it spurs us into necessary action - going to the doc when something is amiss, for instance. You’ve done that already, and now the wheels are in motion.

As far as possible, try to step back and let the thing play itself out. There’s nothing else useful that worry can do for you right now, and useless worry is such a miserable waste of life (says she, who has wasted plenty of sweet life that way but is always trying to do better).

Good luck.

Alison

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Hi Nicole, Do let us know the result of your visit to the Neuro, please and good luck.

Janet

x

Hi all,

It’s been a while since I’ve ‘checked-in’, it’s a bit of a slow moving process all of this! Much of my numbness returned unfortunately, including some very strange wave like sensations down my right side - not painful - just a bit odd. I had my first appointment with the neurologist on Saturday, who has now referred me to get an MRI which I haven’t yet booked. He thinks MS may be a possibility but said even if I did have MS it is unlikely to be as aggressive as my aunt’s was, I think because most of my symptoms so far have been sensory rather than issues with weakness and balance. He suspects the inner ear infections I’ve had in the past (diagnosed due to my issues with my vision and focus) may also be symptoms.

I’m not hugely worried at the moment, and oddly excited about getting an MRI - is that strange?! I’m trying not to think about it really - but am finding myself saying ‘yes’ to lots of things where I may have dithered previously, which is a good thing. I just hope things don’t get worse. Will see what happens next,

All the best,

Nicole

It doesn’t sound strange to me. MRIs are incredibly cool technology and are, to my non-scientific mind, pretty much indistinguishable from magic.

I hope that all goes well for you.

Alison

Hi back again, I saw my neurologist yesterday to discuss the MRI. He was able to diagnose MS. I’m up and down but okay I think. He didn’t want to start any treatment because my symptoms have mostly relapsed. This worries me a little. I think probably because when you’re ill the natural reaction is treat it, doing nothing seems counter to that. Should I double check?

Many thanks,

Nicole

Hi Nicole

Sorry to hear about your diagnosis. A lot of neuro’s wait for two relapses before starting treatment and indeed some of the DMT criteria states this. Not all do though and its worth a discussion for sure. The earlier you treat the better. Is the consultant and MS specialist and have you been referred to a nurse?

Thanks Humbug, it was a bit of a shock. I’ll ask him. I haven’t been referred to a nurse yet. To be honest it was a bit of a blur but he has told me to email him with questions when they arise and booked another appointment in 6 weeks.