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Awaiting MRI / neurologist appointments

Hello,

I’ve been reading some of the threads on the forum for a little while now and thought it was time to introduce myself and share my story.

My name is Lisa, I’m 34 and have been struggling with various symptoms for some time. For the past year or so I’ve noticed my energy levels haven’t been right. Some days I wake up and I’m exhausted, it doesn’t matter how much sleep I have, there isn’t a pattern to this, it’s a case of not knowing how I feel until I wake in the morning. Some days it feels like I’ve been run over by a bus, my whole body aches, particularly my back, shoulders and neck. My legs feel weak and wobbly, although I don’t have problems with walking. Other days I feel perfectly normal and full of energy.

I went to the doctors some months ago as I’ve also been getting pins and needles frequently in my legs, feet, hands and arms. My left side appears to be affected more but again there is no pattern. The pins and needles normally start in my feet and travel up my legs as far as my calf muscles, sometimes they disappear by moving my legs, other times they stay for ages then my legs and feel go numb. This is particularly bad if I sit on the toilet for more than a minute or two (sorry if this is tmi!) sometimes I can’t feel my legs properly but I can walk fine. I get tingling in my hands and arms frequently, it appears to becoming far more frequent and intense, I’m often opening and closing my hands to try and get ‘normal’ feeling to return. I often can’t feel objects properly when I hold them in my left hand, it’s a really strange feeling. I’ve started to drop things too but not frequently so haven’t told the doctor about this.

The doctor has referred me to a neurologist, she said that my left reflexes are far more prominent then my right and she has noticed some weakness in my left side when compared to my right. My blood work is perfectly normal, as is my blood pressure etc. She said that something is definitely going on and only a neurologist can advise what it is.

About a month ago I started experiencing a really weird feeling in my head, like pins were being pressed again my head, this feeling travelled down my face, along my eyes and cheeks, I was also getting really sharp pains shoot across my head, lasting a second or so, very painful, takes my breath away, then they disappear and come back. I ended up in Out of hours as I started to worry, it’s happened before but it would come and go and wasn’t so intense, however this time it was happening so frequently it really scared me and was really painful. I was kept in hospital overnight, saw a neurologist who said he wasn’t sure what was going on and ordered a CT scan. CT scan was normal so I was discharged with a referral for a brain and spine MRI. Since then My doctor has prescribed amitriptyline 10mg which has recently been increased to 20mg, this is helping a little but not significantly. The sensations in my face have calmed down but the aches, pains, pins and needles are just as bad. The doctor has offered Gabapentin also but I haven’t started taking it yet as I was reluctant to increase the amitriptyline and start a new med at the same time but as I’m writing this post I’m wishing I’d taken the script as I’m really struggling with the pains today!

More recently I’ve also been getting muscle twitches all over my body, they come and go, could be in my back, legs, arms, hands etc, really no pattern again. I also get electric shock type feelings shoot up my back, normally start around the middle of the back and shoot towards my head.

My eye sight is fine, I have a very small script for glasses, mainly due to glare and I work in IT so get eye strain. However about 6 months ago I was referred to RACE as I was having pains in my left eye and lots of floaters, I was being checked for optic neurosis but thankfully tests were clear and I was treated for dry eyes. I did have loss of colour saturation for reds but nothing major and this resolved itself within a few days. When I was younger I used to get bouts of double vision but nothing for years.

My doctor has asked me about my bladder, bowels etc and whether I’ve fallen. I’ve had severe IBS since my late teens , had MRIs and various other tests and whilst the IBS is really bad there are is physical damage to my bowels etc. Even during my MRI I was being injected with buscapan as the stomach cramps were so frequent it was affecting the quality of the MRI! Whilst I’ve not fallen, I am very clumsy. My knees have always been a bit problematic in the past, they go through periods of ‘giving way’ but this has been the case since I was a teenager and I thought it was related to the amount of running and dancing I used to do.

I’ve been told I have Morton’s neuromas in my feet too for the past 2 years, the podiatrist said it was caused my pronation following pregnancy but I’m not convinced as the electric shock pains in my feet seem to be getting worse and are travelling to other parts of my feet.

I’ve got an appointment with neurology on 23rd June and should have my MRI before 16th June.

I’m really not sure what is causing all this, whenever I do the dreaded google search MS comes up, it really worries me as I have 3 children and my little girl is only 2 and needs lots of attention and takes masses of energy, I’ve been struggling to carry her and don’t have the energy of late which is horrible!

My mum thinks it’s all stress related, I went through a particularly difficult period last year (related to my little boy) which resulted in me taking some time off work with stress and anxiety but this feels completely different. I know when I’m stressed, I get butterflies in my belly and anxiety makes me vomit (sorry tmi again). I’ve had counselling for this situation and it helped massively, I don’t feel stressed these days, I feel far more confident in myself and I’ve taken the stance if something is out of my control I don’t worry about it and if it is in my control I’ll do what I can. I used to work about 50 hours a week, plus travelling 100 miles a day / 5 but now I work 34 hours (if that), work from home 2 days a week and only travel 2 days so I’m pretty convinced this can’t be stress.

Sorry for the extremely long post, I’ve only just realised how long I’ve been babbling on for.

Anyway that’s my story so far, I really hope to get to the bottom of what is going on soon and I start getting some treatment to start to feel more ‘normal’ again.

If if anyone has had the patience and time to read this terribly long post and has any advice or has experienced similar symptoms as me I’d been really interested in hearing from you. Thank you

hi lisa

the electric shock thingies are likely to be l’hermittes signal.

this fits with ms.

try not to get stressed because that just makes your symptoms go haywire.

go for the mri and take it all from there.

if you DO have ms, it really isn’t the end of the world.

the main difference is that you’ll slow down considerably, who needs to dash around everywhere anyway?

the main thing is your role as a mummy.

you will be fine, honest.

when things get tough, ditch the non essentials (ironing! - nobody ever died from wearing wrinkled clothes), spend more time on cuddles and stories.

the best therapy ever!

carole x

Thanks Carole, your right cuddles are the best!! X

I thought the electric shock pains may be related to MS but it seems the shock runs from the head down the spine in ms not the other way around. The pains I’m getting in my back and spine are definitely going up the back not down - not sure if that has any clinical importance?

Hi Lisa,

Obviously you’re very concerned because your symptoms point to MS, but there are a other conditions that mimic MS.

Even a GP cannot diagnose you. It takes a consultant neurologist who, after over a decade of training and experience, arrives at a diagnosis by a process of elimination.

Your MRI is a important aspect of this process. The neurologist, sometimes with a neuroradiologist, will analyse the scans and make a decision based on what they see.

To make a diagnosis there will have to be other tests and observations before a formal diagnosis can be made.

I hope you get the answers soon, but until then you are more than welcome at the Forum.

We do understand and you don’t have to face this alone.

Best wishes,

Anthony

Thank you for the reply Anthony. Everyone on this forum seems very welcoming. I feel a little silly joining the forum without really knowing what’s going on but have found some of the threads and discussions very informative.

Hopefully within the next few weeks I will have a clearer picture of the cause of my symptoms. My left arm has been particularly bad these last few days, tingling and going numb quite a lot which is very frustrating!

I spoke to the hospital this morning and I’ve been promised that I’ll have the MRI ahead of my neurology appointment on 23rd and the results will be with the neurologist in plenty of time ahead of my appointment, that way I’d hope by the end of June I will have a better indication of what is going on or what’s been ruled out. I am also taking some comfort knowing that my GP has been so supportive and that I’m having both the brain and spine done at the same time.

In the meantime I’m taking the amitriptyline and going to start with a low dose of Gabapentin from tomorrow too to see if that helps in some way. I was very reluctant to start on any meds without actually knowing the cause of the symptoms but I’ve had to give them a go given the frequency and intensity at times.

Thanks again Anthony.