Slightly concerned, but I'm mainly looking for advice

A little bit about myself: I’m 19 years old, female and just finished my first year at university. I have a brother with MS and whilst I have some health issues of my own, I have never been spoken to about the possibility of me having it. I’m sure this is a result of my age and the fact that he was only diagnosed a few months ago.

From a fairly young age (I think about 10 or 11) I had issues with back and joint pain that has worsened over the years, spread and changed. I was told that my constant tiredness is CFS and not linked to the problems with the rest of me. Over the last year my symptoms have become a lot more noticable which I have kind of been lost with what to do about it because my referal from paediatrics to the adult hospital never happened therefore I have no consultant to turn to. My pain hasn’t worsened too much but I have noticed a major increase in my muscle spasms, shaking and weakness. My hands and feet are constantly discoloured and cold and when I lie still (or think about it) I notice a strange sensation in my arms and legs which I have no real words for. My hearing has deteriorated and I have bad tinnitus too. The newest symptom is slight bladder dysfunction - I get very sudden urgent need to pee and often have to run to the nearest toilet.

I never had a proper diagnosis and the few bits and bobs of it that have been diagnosed have been thrown out by the next doctor with no new name. I can go for weeks being fine if I am very lucky, but generally my mobility is impaired to an extent and I have to be careful about how hard I work myself, how long I can spend out of the house and especially how much rest I get because I know exactly how bad it can get if I am not careful. A year and a half ago I overworked myself and spent a month bed bound then had to use crutches to enable me to walk for the next 2 - that is the worst episode I have had.

I’m sure most of you reading this will think that I have been on the internet to try and self diagnose, but the fact of the matter is that I gave up on finding a diagnosis years ago and have just been dealing with it the best I can by myself. I was reading up on MS so I am better equiped to help my brother as he faces the rest of his life, but I couldn’t help noticing how many of my symptoms fit.

I am currently changing doctor so hopefully I will be prescribed painkillers again as my current GP has told me I’m lying to him to get drugs which shocked and offended me to say the least.

Please give any advice you have. I do not mind people being blunt if this sounds nothing like MS, I just want to know if it is worth exploring MS or any other neurological conditions with my new GP if they will listen.

Hi Gigi, sorry to hear that you’re going through so much whilst still so young! I’m twice your age (eek!) but have just started exploring this possibility myself. The best advice I’ve had from my own GP and expanded upon by the lovely folk here is to keep a symptom diary. I just wrote mine as it fell out of my head but do date your entries. When you are about to see your GP again, simplify your list and focus on the main five symptoms. You deserve to be listened to and taken seriously. Be gentle with yourself and have the courage to ask for what you need! Wishing you happiness and health :heart:

Hello Gigi welcome!

I’m sorry that you are having such problems.

It seems only logical for you to to wonder about MS and having a sibling with MS does make developing MS more likely tham for the general population. Nevertheless, even an identical twin of someone with MS has only about a 30% chance of developing MS themselves.

I remember hearing (on the radio or seeing on a BBC or Channel 4 documentary) about the lack of continuity of care caused by a failure to transfer patients from paediatrics to adult hospital, and the problems caused.

I am glad that you are currently changing doctor (GP I assume) your current doctor’s attitude is shocking. I would think that pressing your new GP to investigate your symptoms would be they way to go now. A GP should refer you to a specialist as neccessary.

I’m sorry that I can’t say anything more positive but I hope you get the support you need and some answers.

Hi all,

The symptom diary does seem like a good idea. I tend to write down a list of everything every few months just so I can highlight any new and or changing symptoms but I might have to start doing a more regular thing.

I haven’t heard of anyone else having problems moving from paediatrics to adults, but its a real shame that its enough of a problem to make a documentary out of.

It has taken me a year to realise that he is an unreasonable man, but the final straw was when he tried to charge me £40 for a sick note for university.

Don’t worry about not being positive, I have learnt to live every day as it comes to find strength and positivity in the little things. The little things in my life mount up a lot higher than my health and other bad bits so I can take things like this and still stay positive. In a way, any diagnosis would be a massive plus because right now I have no certainty or even vague idea about my future. I have no treatment plan because there is no way of treating an unknown illness and I have no real support for exactly the same reason. I’m blessed to have an understanding university, family and friends