Hello, I am new

New diagnosis and before diagnosis
1

Hello,

I’ve been browsing this site and forums for a few weeks now as I have been experiencing strange symptoms which may or may not be MS.

This is a summary so far.

About 18 months ago I began to get numbness in the left side of my face. My GP said it could be due to dental problems. 10 fillings replaced and £800 later, things were no better. The numbness comes and goes. I try to ignore it, but it is getting worse. The first time I got it I called NHS direct and they told me to go to A&E, which i did but they just said trapped nerve, and sent me home.

Over the same period of time, I have been getting severe migraines and nowtake daily medication for them. I have had migraines since I was a teenager but almost grew out of them. But the last 2 years or so, they have come back much worse than before. I sometimes wake up with one, and the pain of the headahce is so bad I feel like I could pass out.

I have also been having lots of bowel problems and was diagnosed with irritable bowel. I’d never had symptoms of this before the last 2 years or so.

I also feel like I react much worse to temperature change than previously. For example, walking to work in the winter, wearing gloves, my hands are so cold they are extremely painful. But it is actually warmer this year than the last 2 or 3, and I have never felt like this before.

Then about 3 or 4 months ago I started to get numbness going down my nack and back on the left too. Into my shoulder blade.

The left side of my face is completely numb as I type this, plus part of my right cheek.

If anyone has any advice on what questions to ask doctors, please let me know. I am concerned my GP does not seem to think these problems are linked. But up until now I have always been a fit and healthy person, and I do not feel right.

To be honest, I am terrified. I am pretty much alone in my life. My parents are still living but live 300 miles away and are elderly. They rely on me, not the other way round. I moved down south to get work 6 years ago. If I am sick, I have no-one to care for me, no-one to pay the bills, nothing.

I am really just posting to say hello and that I have learnt a lot from reading all of your posts

2

Hello and welcome :slight_smile: I’ve not got long right now so will reply properly later. Didn’t want you to think we were ignoring you! I don’t know where everyone is - unusually quiet on here last night / this morning. Back later :slight_smile: Karen x

3

Hello and welcome to the forum.

I think your GP should be referring you to a hospital specialist and hopefully they will order an MRI for you.

Obviously something is wrong.

The IBS could be due to anxiety…it often does.

Why not ask for a referral? I dunno if it could be MS…any mobility problems? Eye problems?

I dont have MS, but spent a lot of years being told it most likely was.

I know what years without a diagnosis feels like.

Merry Christmas.

luv Pollx

4

Hello again :slight_smile:

I agree with Poll. I think your GP should be referring you to a neurologist. It may be that the migraine, cold hands and IBS are unrelated to the numbness, but they need to be checked out by someone who can tell you that for sure.

Blaming a numb face on a dental problem is a bit daft in my opinion, but even if it were true, how could that explain the neck and back being affected? The nerve that controls sensation in the face doesn’t have anything to do with the neck or back!

One thing: I’m wondering if the pills are controlling your migraine (because migraine can cause all sorts of neurological symptoms)? If they are, then your GP really hasn’t got any decent reason not to refer you to a neuro.

Do try not to worry about what might and might not be behind your symptoms and what the future might hold. I realise that this is almost impossible, but it’s best to take it one day at a time and keep an open mind. Worrying about the worst case scenarios will only stress you out and may be completely pointless as it may turn out to be something relatively easy to manage like your migraine or maybe even a vitamin deficiency.

So first stop, GP. Be assertive: you want a referral to neurology about the numbness (which cannot be a dental problem and now affects more than your face). It wouldn’t hurt to have a thorough battery of blood tests too.

Good luck :slight_smile:

Karen x

5

Hello and welcome,

You’ve already been given good advise from Karen so I will not add anymore except go and see your gp, and I wish you the best.

Janet

x

6

Thank you for all your kind messages. I have another GP appointment in the new year and hopefully she will refer me. I’vealways had eye problems so I doubt this is related. I get free NHS eye tests so must be bad. No mobility problems as far as I am aware. Never had any sense of balance though. For example I cannot ride a bike and never have been able to. Happy Christmas to all

7

Welcome to the site, Janet and Karen are cool and give some great advice. I hope you see your gp soon. Adam x

8

Welcome to the site, Janet and Karen are cool and give some great advice. I hope you see your gp soon. Adam x

9

Hi cupcake,

Get your GP to have an ASP antibody test on your blood; could be Hughes Syndrome; http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/736

Or check out other tell tale symptoms on http://www.hughes-syndrome.org/ do not leave it demand it is checked.