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Early symptoms and awaiting neurologist appointment

Hi everyone

My first time posting here. I’m 25 and haven’t been diagnosed, but my GP has referred me to a neurologist to ‘rule out’ MS. Unfortunately the appointment isn’t for another 2 months still….gotta love NHS waiting times!

I just wanted to write down what’s been going on and get some insight on others’ experiences and whether anyone can relate to my potential early symptoms.

It all started over Easter weekend this year when I had 3 episodes of vision loss in my left eye lasting about half an hour. The first day I assumed my blood sugar was low (hadn’t eaten breakfast yet) but when it occurred on the next 2 days when I had eaten, I made a GP appointment. He sent me to the eye hospital A&E, where after lots of tests my vision was reported normal. They started filling in a neurology referral, but for some reason changed their mind. The episodes were put down to migraine, although I didn’t have any headache associated with the ‘attacks’ and I have never had migraines before. I did have a feeling of electricity in the back of my head after one of the attacks though - not really painful, just as though my brain was shaking.

Since then, I have had daily stabbing head pains, usually multiple times a day. Most of the time they last for a few seconds, but I’ve had a few episodes when it lasts for up to half an hour and I feel like I just want to claw something out of my brain to make it stop. I’ve also had pins and needles down my arms/legs sometimes, and an episode of weakness in my left arm where I was hardly able to grip/lift anything.

I made a headache diary at my GP’s request and included other symptoms I was getting. My GP did various blood tests (thyroid normal, B12 normal (I previously had a very severe deficiency), vitamin D low (now on supplements), U&Es normal, WCC pretty low for some reason (1.76)). After going through my headache diary, the GP decided to refer me to a neurologist.

I’ve also had chest pains which felt like a pulling sensation across my chest and making it hard to breathe. One time this lasted for 5 hours, but usually only a couple of hours max. I had an ECG which the nurse who did it said she was ‘concerned’ about, but when it was reviewed by a cardiologist it was reported as normal.

Some days I am exhausted. Like I don’t want to talk to anyone, do anything - just lie down and stare into space. I can’t even think straight. I have episodes like this which last for a few days, then I wake up and feel fine again. I always make sure I get enough sleep (8 hours per night) and it doesn’t seem to come with any sort of pattern.

Last week I had an episode of severe vertigo whilst at work and sitting down which lasted a few minutes. I’ve never had that before and it was really scary! I’d recently eaten, wasn’t concentrating particularly hard and wasn’t stressed. My right arm felt really heavy for a few hours afterwards. I hadn’t been too worried about MS before that. I haven’t told my GP as I haven’t been able to get through to speak to him.

I’m interested to hear other people’s experiences - are these transient symptoms possible with MS? From what I have read, symptoms tend to come on suddenly and don’t get much better.

Or can anyone relate to these as early symptoms?

Of course I’m not looking for anyone to try and diagnose me over the internet!

Thanks for reading

Peacelily

hi peacelily as you said, i can’t tell you if it’s ms. but those symptoms are very real and unpleasant. good that you have been referred to neurology. it may not be ms but you should insist on finding out what is causing it all. take someone with you who knows what you have been going through. this is because they can prompt you if or when you dry up. they can also remember what the neuro says. wishing you a good outcome carole x

Thanks for your reply Carole. Good idea about taking someone with me to the appointment. I might see if my mum can come with me. My partner has been worrying a lot about all this so may not be the best person to take! I have periods of being absolutely fine and thinking there’s nothing wrong, then I’ll have more symptoms or more severe head pains and remember everything that’s been going on. I think it’s that feeling of feeling like a fraud which I’ve read about on here! I really don’t want to waste anyone’s time. I’ve always been fit and healthy before all this. peacelily

Hi peacelily, everything carole said and also write everything down. Keep/make notes of symptoms and how long they lasted for too. Sharon x