Forum

Where do I start!!!!!

I have finally broached the possibility of MS with my doctor this week and am finding it both daunting but at the same time quite a relief to have found this site. It all started 4 years ago when I had what I can only describe as a stroke like symptom which left me unable to use the right side of my body. The neurology team were very helpful but couldn’t really give me any reasons so I was referred to London UCLH where I went through various tests for migraines. I have never had painful headaches but since the stroke like episode I have had constant flashing lights, stabbing pains in eyes and rubbish balance. The balance can be so bad that I panic people will think I have raided a local pub!!! On my last visit in October last year (I had to go in to hospital every 6 months for steroid and pain relief via IV) I mentioned that I had constant pins and needles in the bottoms of my legs. I eventually dismissed it all until I started playing my cello and piano again when I realised I couldn’t feel my fingers on the strings or the keys. I also get horrible episodes where I seem to forget how to swallow (which can be rather scary). What I am confused about is after being with the migraine team in London, would they not have picked up on MS? Anyway - blood tests next week and already been referred to neuro team, so I guess the waiting game and limbo land awaits!!! Does anyone have tips on remaining sane in the meantime??? Love to all Nickey x

Hello and Welcome Nickey,

We are a jolly band of people on here who are only to pleased to be able to answer any questions you may have. Or if you just want a rant or moan that’s fine as well. Pins and needles and loss of balance is a symptom of ms but can of course be caused by other things as well. It seems at least you are on the right track, blood tests and referred to neuro team. I think most people stay sane by letting it all come out on here, just say what you feel and how you feel. The one thing you really need is patience as sometimes it can take a while for a dx. The neuro would probably request a MRI scan as well. Before you see the neuro write a list of what’s wrong starting with your worst symptom and make sure you miss nothing out.

Once again welcome.

Janet

x

Hi Janet I will make sure I arm myself with a list - that is very good advice as I normally forget something and then kick myself for not mentioning something!!! It is very reassuring to know there are other people to talk to. It’s all a bit daunting right now but stiff upper lip and all that!!! How long did it take for your DX? I was somewhat shocked at my doctor as he knows my medical history and referred me straight away which was reassuring as I was expecting a ‘don’t be daft speech’!!! Thank you Janet

Hi Nickey,

I waited about 3 weeks before I got my dx, after loads of tests at Kings Colledge Hospital an MRI of head neck and spine and my medical history. I was lucky as many people have to wait ages that’s why I said patience is the word. It’s not easy I know. The only thing you can try and do is keep yourself occupied with other things, which again is not easy.

I wish you the best of luck.

Janet

x

Hiya The neuro referral sounds like a positive step. It must all be very upsetting and frustrating for you. Not sure about the distracting thing, sometimes easier said than done. But on here, amongst the serious, supportive posts, there are also many of us being a little nuts and silly to amuse ourselves. Have you been on the ‘where is everybody from’ post started by Clare007? That’ll give you a laugh and some idea of how loopy we can all be ;0) Take care and keep us posted. Cx

Hello Claire,

Were you suggesting that my post was not serious and supportive, because as you suggested going onto ClareOO7 is exactly the same thing, being distracted?

Janet

I think you already have plenty of practice in the art of remaining sane in adversity, with the past 4 years’ experience to draw on, so you’ll be fine! It’s just a matter of being patient, I think, or trying to be. I hope you get to the bottom of your troubles soon.

Alison

x

I think she isn’t dismissing your post at all Janet - I read it as saying it’s not easy being distracted but amongst all the serious posts (including this one) are some silly distracting ones which might work such as the Clare007 one. You always give good, sound, helpful advice, dw xxx

[quote=“debc”]

I think she isn’t dismissing your post at all Janet - I read it as saying it’s not easy being distracted but amongst all the serious posts (including this one) are some silly distracting ones which might work such as the Clare007 one. You always give good, sound, helpful advice, dw xxx

[/quote] Hi Janet The above post started by claire007 gives us all a hence to “meet” reflect on our condition, see its not the end of the world (that’s hard), share stories, advice,humour. You where signposted here as he post is massive and regularly visited, it could save you trawling loads of posts, threads for support. Ye we are a bit off the wall, but we all have valid experiences and are all in the same boat, ark it’s that big (sorry couldn’t help it) and we are all there for each other. The “family” bit is right Mike :slight_smile:

Thanks deb I thought I was being useless, and Mike thank you also.

I guess I just got the wrong end of the stick…nothing unuaul there then!!!

Janet

x

It happens to us all we all get the shi**y end of the sick sometimes, but you have to laugh. They says money makes the world go around _- don’t think so it having a laf and I av fa I make a church mouse look like a lottery winner.

I have really appreciated your kind thoughts and help - its really helped a lot through the last couple of weeks.

I am off to Neurology on the 15th August - so not too long to wait.

In the meantime I have had my bloods back with very low Vit B and extremely high ESR so not sure what is happening!?!?!

Any hints??

Nix

Hi Nickey,

I’m sorry I dont have any answers for you, however I was writing a post as you were writing yours which is kinda weird.

To cut a long story short my onset sounds very like yours, I currently get scared and upset with the Eating/Swallowing issues which was the title of my blog.

So I can say although I am not diagnosed either, I certainly can empathise with you.

Feel welcome to PM me anytime.

Gill x

Hi Nicola, and (a bit of a late! sorry!) welcome :slight_smile:

Low vit B12 might be the answer to your problems - it can cause all sorts of neurological symptoms, even sometimes to the extent that it can be difficult to distinguish from MS.

Got my fingers crossed for you that that’s what’s wrong - because it’s treatable! :slight_smile:

Karen x