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Advice on being taken seriously

Hi all,

I haven’t posted on here in a while but once again I’m back feeling frustrated at the diagnoses process and wondered if anyone had any wisdom.

For some background: I have been experiencing muscle weakness, pain, fatigue, altered sensation, headaches and eye pain, light sensitivity, painful urination and pins and needles on and off since the start of 2014. I’ve had 3 MRIs on my brain, 2 of which showed lesions. I was left about 9 months ago with a semi diagnosis of functional problems (although no one has explained how my lesions are OK when a previous neurologist said they were not within the normal range). I have not had any other tests apart from the MRIs.

My issue is that I have been feeling pretty rough recently and I’m getting cramps and spasms in my right arm and leg. My hand constantly feels like it wants to be clenched and my muscles ache a lot. I’ve also spotted a pattern that even when I feel generally OK I get more achey and have a lot more weakness and spasms just after I’ve had a period.

I’ve got a GP appointment coming up and I really want them to let me see my neurologist again. Last time I went my GP insisted that my eye pain and light sensitivity was just tension headaches, and the time before they asked me if I wanted antidepressants. I’m really struggling to get them to take me seriously! I’m only 25 and I look quite a bit younger but that shouldn’t be a reason to belittle my experiences. I’ve even directly asked for more tests so that we can at least officially rule out MS but keep being told that I can’t have them.

Does anyone have any advice for being taken seriously?? I feel like the more times doctors insinuate that I’m being dramatic the more I start to wonder if I am- and I know my body and I know that something is not right!

Sorry to rant, I think I really needed to get that off my chest!

Georgie.

hi georgie

the link to your menstrual cycle is due to the raised body temperature during a period.

if you have a virus or infection this could be what is making you feel so bad.

ask the gp to give you a urine check.

UTIs are notorious for causing relapses.

try a different doctor at your practice.

don’t mention ms just tell them that you know something is wrong.

hopefully they will see from your records that you have seen a neuro and what the results were.

at 26 you should be living your life.

good luck

carole x

Hi Carole

Thank you for your message, I’ve had lots of urine tests and they always come up clear, but I will ask about menstrual cycles and raised body temperature for sure.

I actually ended up going to the GP urgently today as I woke up with tingling and a freezing sensation in my arm and I can tell that my arm is there but I’m not really in control of it. The good thing about the last minute appointment was that I saw a different GP and he drafted a letter to my Neuro whilst I was in the room- so fingers crossed they will see me again!

I really want my neurologist to officially rule out MS- they keep leaving me hanging and I feel like they are reluctant to organise further tests that could rule it out. It has been so long and I don’t mind not having a diagnosis, I just want to know that it isn’t MS!

Georgie x