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Symptoms, MRI brain scan normal

Hi All,

new member here, very worried and unsure what is going on but MS is on my mind.

I have been diagnosed with Fibromyalgia now for 17 years since i was just 16 years old (symptoms and investigation started when i was 13) with this I have chronic pain, fatigue, IBS and restless leg but never had pins and needles or numbness before up until now

A few years ago I thought I was having a stroke, i remember it clearly as my face felt funny and my back went cold all on one side. this lasted for about half an hour so once it passed i didnt think anymore of it.

Over the past year or so ive had an on/off flicker in one of my eyes and my eyes get very tired especially when its sunny.

a month ago i got pins and needles and coldness in half my head, right hand side all around the back up to the top of my ear, this was for a couple of hours and then went.

the week after it came back but this time the coldness and numbness went from the top of my ear all round the back, down my back arm and right leg to my knee. I went to the doctors the next day as it wasn’t going and she referred me to the neuroligist but there is a 30 week wait for my local hospital. she also gave me nortriptyline to try.

When this started the weather was 34c which is normally good for my fibromyalgia and i normally flare up in cold weather.

this hasn’t disappeared up until now but its moved around, sometimes my left hand side, sometimes just both my thighs, my feet and lower legs, both arms. sometimes pins and needles, sometimes ice cold feeling, eyes are going blurry on the side that is cold. on top of all of this my chronic pain has flared up too.

Ive had my eyes checked and my optic nerves are fine.

Ive had an urgent head MRI which has come back “normal” awaiting to speak to the gp to see what normal means and also to see if i can have one on my spine which im not sure why that wasn’t done at the same time to be honest.

My speech has felt slurred at times too and I’ve choked on my own saliva more then once!

at one point every-time i went to the toilet (both ways) i was getting shooting cold pains down my legs.

Alot going on i guess but this is all pointing at MS as far as i can see on good old google

I have to wait until october for my appointment :frowning: I cant afford to go private although i wish i could and nothing including the meds gp gave me is giving me any relief

I have an autistic daughter who is used to seeing me in pain but as its flared up like this she is super anxious on top of being anxious about going back to school.

I have to drive long distances for work and currently on a “fit for work note” to work from home only as i don’t feel healthy enough to drive anywhere or safe too but this runs out early october :frowning:

Can anyone offer advice or at least validate/invalidate my thoughts of MS

Many Thanks

hi

keep on seeing your gp because it should end up on your medical records.

ring the neuro’s secretary and ask for the email address.

email your neuro with an update on these new symptoms.

there are so many things which can morph into ms, maybe fibro is one of them.

ask your gp closer to the time if you can have another fit to work note.

hope your daughter is coping with school.

take care of you!

Hello

One thing I would say is that many of the symptoms you’ve described, from what you say, seem to have come and gone relatively quickly. That doesn’t sound like MS to me. Have a look at https://www.mstrust.org.uk/about-ms/ms-symptoms/managing-relapses This explains that an MS relapse lasts for at least 24 hours. Now as you may be aware, we are all different, so it’s possible that an MS relapse can last for less time, but after having a clear brain MRI, it’s entirely likely that it’s not MS.

At the same time, it does sound like you need to get some answers for the problems that you’ve been experiencing. And they do sound like neurological issues might be a factor.

I know it seems like October is a long way off, but it will come soon enough.

Meanwhile, why not start keeping a health diary? You would at least then have some information to give the neurologist when you see him/her. So, you could go back over the symptoms you’ve experienced and put dates to symptoms. See how long individual symptoms have lasted, whether anything is staying with you for longer, or if every symptom resolves.

Good luck.

Sue

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Thank you both, I will call and see if i can get an email address. I am keeping a diary of it all I added in the 2 incidents to give a background but the symptoms have now lasted for 3 weeks but the coldness and numbness is moving around. this week its been my left hand side on my head and shoulder, the week before it was a mix of right side head, back, arms and legs and the week before that it was all my right hand side. there hasnt been a days break without some kind of coldness, pins and needles and tingling. There is also pain (normal fibro pain that ive had for years) everyday on top of this. swallowing and my speech has been this week with a very cold and wet feeling ear too. Appointment is now booked for september as i managed to get a cancellation so hopefully i will find out soon enough what it is or if it is my fibro displaying new symptoms. Looking at the difference between MS and fibro though the only symptoms that differ are the coldness and pins and needles and that MS actually damages the nerves wheras fibro doesnt, if that makes sense.