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I don't know what to do!

I am at a loss, I have no idea what to do or whom to turn to.

Over the last two years I have been experiencing periods of time where it feels like my body is giving up on me (showing symptoms of MS) and this may last a few weeks and then go again (which is always a relief as my two favourite hobbies are walking and dancing).

Recently, I have been experiencing more symptoms and much more pain. So I went to see my GP hoping to get some help, he did not believe I was in pain, did some blood tests and sent me on my way. The symptoms were getting worse and affecting my vision, speech and memory, so I went back to the GP (at the time as well as pain and weakness I was seeing blobs, losing balance and I was so confused). I was accused of being on drugs and was asked if I wanted to kill myself. I went to hospital hoping to be helped there, I was shouted at for not having a referal from my GP and again I was asked if I was on drugs. So I went back to the docters and saw a different GP, only to have her rubbish me off too. None of the GP’s believe me and therefore are refusing to refer me for any further investigations.

I am not a healthcare professional, I don’t know what is wrong with me and I don’t know how to help myself when I am in pain (I am not keen on pain-killers). I don’t know whether the symptoms are MS or another condition with similar symptoms. I don’t want to feel like this, I don’t want MS or any other condition that will make me suffer like this for the rest of my life.

What am I meant to do now? Who do I turn to to find out what is wrong with me? And how can I manage the pain?

I know that maybe I am asking too much, but any small bit of advice, anything at all… is better than my nothing.

Thank You!

So I can presume, after having no reply, that I am also not belived here either.

It is okay if you have had a diagnonis, at least you can move forward.

Me I am stuck, in pain with no answers and no help.

Why did I even bother to ask for advice?

Hi Beth,

Due to some ongoing issues with spammers trying to sell everyone here kitchens, posts by new users have to be moderated before they’re published - that’s why there’s no reply, not because you’re not believed.

I’m sorry for any distress the delay in publishing has caused.

Best,

Ellie (admin)

Hi Beth,

I’m probably not the best person to reply to you, because I’ve not yet managed to successfully negotiate my way through the medical system, to arrive anywhere near a diagnosis. What I can do though is sympathise completely with your situation. I’ve had problems for almost three years now and have not had the support that I needed from the family doctor’s practice. The only thing I can suggest to help, is to take someone from your family with you as support. I’ve taken my husband with me twice this year, and I get the feeling that when a family member is there, the doctor doesn’t take things quite so lightly. I actually live outside the UK, so I additionally have to explain my symptoms in another language, which probably doesn’t help. So, hubby chips in when I’m struggling for words.

Finally managed to get a neuro appointment this week, so maybe my strategy has worked. Keep your spirits up, and don’t let them get you down.

Astro

Hi Beth. sorry to hear what is going on with you and the difficulties you are having. is there a GP in the practise that you trust? If not, is it worth transferring to another practise and seeing a new GP? It is a good idea to keep a record of symptoms without letting that take over your life. Things like what, where, how long it lasts etc. why do you think the GPs won’t listen? I understand your frustration as i have been fobbed off by doctorsnover the years (foot injury - was told nothing wrong but have needed surgery twice since &it will never be right again, and apendicitus and adhesions - but apparently that was all in my head and not my abdomen!!!) So i really do understand. it is your body and you know when it is not right. Do not give up. xx

Also, if you are not happy with the conduct of a member of nhs staff you can make a complaint. Just ask for a copy of the complaints policy.

Beth,

Just a suggestion but try writing it down, I know when I’ve been upset and seen doctors I’ve managed to jumble things up and get a bad outcome (my little codeine episode was the worst, I ‘lost’ a good month of my life due to that hideous drug!).

My point is some healthcare professionals just don’t know how to handle us if we’re too emotional or if we’re getting confused - if we’re not giving them clear concise details of our symptoms then they will, probably in all fairness, say what they think is right.

Please don’t be offended, I’m not suggesting you’ve been over-emotional at your appointments but if you’re getting confused then it’s not always going to help. I had mentioned to a GP that I was having trouble walking and she ordered a B12 test (low B12 levels can mimic MS symptoms apparently, so she wasn’t daft!) BUT it was after visiting an osteopath about my leg misbehaving that I was referred for an MRI

Good luck Beth but try giving the doctor a chronological breakdown, it might help getting them to listen to you

Sonia x

Sorry to hear you are having such a hard time, I agree with the suggestion of writing down your symptoms and taking someone else with you to your GP. You also ask what you can do to help yourself when you are in pain as you don’t like taking painkillers. I have been doing mindfulness meditation (there is actually a book specifically for pain) which I found very helpful. Good luck and don’t give up