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frightened

Hi, I’m not even sure I should be posting on here, I haven’t had a diagnosis, I have only just been referred to the neurologist!! My doctor advised along with some life changes to come on this site and read up, My Grandad suffered with MS and for me it means wheelchairs, lots of pain and discomfort, and ALOT of pestering my granny. The point the doctor was trying to get across to me was infact it’s not always the case, as I have seen from reading in the forum…

Anyway, what made me decide to write a post?!! Was my fall last night! I was going down and step and my feet remained where they were but i unfortunately didnt and landed with a very painful, embarrassing thud…. This came as such a shock, and has now put the fear of god in me… I have had many other symptoms and recently had confirmed that my bowel is in a spastic state, which is why along with the numbness pins and needles in both hands and feet, a very odd burning sensation in my nose!! (odd) but in rare cases when no allergy’s is linked to ms suffers… the doctor decide that i needed to be checked… I have had other things hapen for instance for no reason whats so ever my right arm felt like the muscles were tearing, and a burning sensation in my back giving a wave of numbness running down my legs! all of which had been put down to major surgery I had on my hip some two years ago…

I feel i’m rabbiting on now, and feel such a fraud to, but after last night falling I feel this is something, something isn’t right and I’m frightened…I haven’t told my doctor yet about falling, given that i already feel such a hypercondriac…

Hello! Please don’t feel like a fraud & please don’t think you are a hypochondriac!!! You are not imagining the symptoms you are having x

When odd things are happening to your body they can be very scary & when they have gone it can be easy to downplay them & think you imagined them as easy as it is to sometimes exaggerated them! I’m there at the moment too!

I can understand how MS is a very real fear for you after seeing your Grandad go through it, but it could be a lot of other things causing your symptoms. I don’t know much but I do know that there are lot’s of people on this forum who have been through all this & can give you much better advice than me xxjenxxx

Hi Andrea and welcome! Firstly never be afraid to post anything on here, I was in limbo for over a year and it’s the most frightening of places to be. I was diagnosed less than a week ago and to be very blunt it was a huge relief, I don’t think there is anything worse than what if. My grandmother had a very aggressive form of ms and that was my only reference. Mine is vey different. I can walk, talk and get on with daily life. I have good days and I have bad, but who doesnt. There is a a lot of support on here and the first response I ever got was from a lady called Karen, she said to me very clearly " MS Is not the end of the world" At the time I thought it was the end of mine! Throughout my year in limbo she and others have replied to all of my posts they have answered all of my questions, even the silly ones and more than anything else they have made me feel that I’m not on my own. You are not alone in feeling these strange symptoms and please don’t be frightened I can honestly say I just have a new sort of normality. Please don’t google lots on ms, there are loads of crackpots out there. I have stuck to this site but my ms nurse also recommended the ms trust website for clear no nonsense information and advice. I would suggest that you keep a diary so that when you go to the neuro you can give him accurate descriptions of what has happened and when. Best of luck, Chis.

Hi Andrea and welcome to the site

As the others have said, you are not a hypochondriac or a fraud and you should feel free to post absolutely anything on here We all understand and are in it together!

The odds of you having MS are slightly higher given that your grandad had MS, so it’s obviously going to be one of the things that the neuro will focus on, but there are actually lots of other options too, some of which are easier to treat. If it does turn out to be MS, there is no reason for you to turn out like a feminine version of your grandad - MS is massively variable, even within families. A small proportion of us do get severe MS, but most of us are much luckier and with the excellent meds & therapies available these days, life with MS is much easier than it would have been for your grandad. So it really isn’t the end of the world! In fact, it’s still possible to have a really good life.

As Chis said, please write a list of things for your neuro appointment. Try and remember when things happened so you can put rough dates next to the symptoms (when they started, how long they lasted / if you still have them) and look back over your life to see if there is anything “weird” that you’ve had before that might actually be related. Keep the list as concise as possible and make a copy of it. Do not hand it over to the neuro or it may end up not being read properly! When she/he asks you what’s been happening, read through the list bit by bit, pausing to let the neuro take notes & keep up with you and answering any questions he/she has, then going back to the list until it’s all done. If the list is too long, you may lose the neuro’s attention and/or interest(!) so try and keep it brief and get the important things in. At the end, give the neuro a copy for your file.

I hope the appointment comes through soon and that you don’t have too long to wait for some answers. Neurology is a bit of a minefield with many conditions not having definitive tests so it can be a bit of a long haul to get a diagnosis - best to prepare for a wait, and hopefully be pleasantly surprised with a speedy outcome!

Good luck!

Karen x

Welcome from me aswell…sorry about the big writing but I havent yet learnt that I cant spend all week out in the sun without my eyes going weird.

As everyone above has given brilliant advise as usual, I can only add my moms ms was very aggressive and she was a give in to it person aswell but as you can see I have spent all of this excellent weather out in the greenhouse and garden.Ok my eyes havent enjoyed it but I have and thanks to my company who have paid me for the privilege!!!

All the best with the neuro

Pip

Hi,

As all the others have said, welcome. Come on the site and say what’s wrong. we can’t always answer it for you but we can tell you of our own experiences. It is a scary time for you but remember you will always be you no matter what.

I wish you the very best of luck tomorrow and do let us know how you get on.

Janet

x

Hi Andrea Just wanted to welcome you too. You have had loads of great advice but I all I will say is that we all understand your fears and worries as we have been there too. Just take it day-by-day and try to avoid the what ifs! It may not be MS but as everyone has said, if it is it is not the end of the world. You will cope with help and support - especially from all the gang on here. Stay strong, Teresa xx

Ay now missus…enough of that feel like a fraud stuff, okay?

Ive been loitering round these ere parts for a few years now and I dunno if I`m coming or going, with the rubbish umpteen numpty neuros have fed me!

Ive seen 13 neuros, in as many years and theyve changed my diagnosis from PPMS to HSP 5 times!!!

So even if you dont get dxd with MS, you`re still welcome.

I have found great support and friendship here and I`m sure you will too.

luv Pollx

Hi Zoe and welcome

Everyone understands on here, so you’ve come to the right place. Why not start a new post of your own - it’s a great way to “let it all out”.

Karen x