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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.

Hey Gigi,

I have no amazing answers for you I’m afraid. All I can encourage you to do would be to discuss seriously your concerns with your new GP, and I would be direct in saying that you have been accused of lying, feel that is unprofessional, and want to at least have a serious conversation. It sounds like something is 100% going wrong, whether that is MS or not…I have no idea. I am waiting to find out if I’m diagnosed or not, but in the mean time have changed my way of eating completely and feel mentally alert and the fatigue is getting less and less all the time. May be great for you to start, and definately for your brother. If you are interested, there are many books, but I can send you the link to a really interesting you tube clip.

Sus