First of all I'd like to say hello! Secondly I'd like to say I'm so sorry but this is a long-winded one! Any advice would be more than gratefully received! I’m feeling so isolated at the moment x
I’m 49 yr old artist, project manager & lecturer in art & design. Yesterday I decided to write down all (well almost all!) the symptoms I have been experiencing for several years! Most have been steadily getting much worse
In 1995 I had a serious car accident where I injured my lower back (L4/L5/S1 large discs prolapse), my thoracic spine (T6/T7/T8 prolapse) and sustained C5 bilateral vertebral body injury with subluxation. I suffered several years of sudden acute lower back pain, which would lay me up for several weeks at a time. Over time these subsided in frequency & for the past couple of years I have only been dealing with more chronic, less intense symptoms. I have always experienced pins & needles in my feet and numbness in my legs, particularly the left, as well as pins & needles & numbness in my pinkies & ring finger.
Over the last few years these and other symptoms have become much worse. New ones have been sporadically appearing, disappearing then reappearing! Others have become constant.
I can’t stand the heat! I feel so ill when the heating is on in the house or the car. I haven’t been abroad on holiday for years because I became so ill when I went. Tests for the menopause keep coming back clear. I have been battling with extreme exhaustion/fatigue that puts me to bed for days on end. I just can’t do activities anymore. I don’t go out at all in the evenings or weekends like I used to. I just reserve what little energy I have for work - but lately I’ve even been missing work a lot because of this.
My legs and arms become like lead, I can’t get out of bed or up and down the stairs. I’m getting horrible burning yet freezing cold sensations in the front of my thighs and severe pain in my left outer foot that comes & goes – usually lasts a week or so.
Last year I was referred to a specialist in haematological disorders like leukaemia as my WBC kept coming back significantly raised for inflammation. She monitored me for 14 months and carried out various tests for things like anaemia/deficiencies, RA, Lymphoma, Menopause, etc. All were ruled out - but my WBC remains consistently high. She has now referred me to an endocrine specialist to rule things out.
4 years ago I suddenly experienced several really distressing episodes in quick succession.
One of my very worst and most frightening symptoms was sudden pain spasms and a crushing sensation around my chest around my whole chest area. It started with the odd spasm that would last a minute or so then ease off – so severe it would stop me in my tracks. As the days went on this became more frequent until the spasms were constant and coming in constant crushing, agonising waves. My husband rushed me to A&E convinced I was having a heart attack! Cardiac tests were fine apart from my blood pressure was raised so they sent e home with painkillers! This went on for around 3 weeks, slowly easing in severity.
The second severe episode was 18 months ago. I started with flu like symptoms without the runny nose - then came the chest ‘squeeze’ but this time my actual stomach started violently spasming as well. After 5 days I went to my GP who just handed out more painkillers and something to stop my stomach spasm – none of which helped - again it lasted over 10 days.
Since then it comes & goes - particularly at night – but has not been so severe. I constantly feel like there is something tight, crushing round my middle.
I have also been regularly getting an electric shock type pain that shoots around my middle into my abdomen - it lasts just a few seconds but is so severe that my whole body jerks up and I sometimes lose control of my bladder when it happens. It’s most distressing when it happens in work.
I get electric shocks down my spine sometimes when I lean over to clean my teeth or look down. Not all the time though.
I've had an ultrasound and an endoscopy that were fine (apart from a small polyp in my gall bladder that they said would not cause these problems).
I have been so convinced this was all due to my back problems I insisted on an MRI of my thoracic region. Before Christmas I had a bit of a shock when I saw the consultant orthopaedic surgeon about the results, hoping he could help but he insists that although I have 2 small bulging discs in the thoracic region my symptoms are not due to my spine. He says they are neurological and he has given me an urgent referral to a neurologist (12 week wait!). I don’t think there are lesions on it.
2 weeks ago I visited my optician as I’m having problems with my vision. We looked at my notes. I first had problems with my eyes in 1998 when I had severe pain behind my eyes and one eye went very bloodshot - at the time I was told by my GP it was inflammation and given drops to sooth it. I went to my optician & or the fist time I needed glasses. A few years later I was driving home one afternoon and I suddenly had double vision - not side by side but one on top of the other (very strange!). I rang the optician working at the time and she told me that if it persisted to go and see my doctor. It lasted a few days but got better before my appointment with my GP so I cancelled. This has happened a couple of times over the years but I've always ignored it knowing it eventually goes away!
4 years ago whilst walking to my car after work I suddenly went blind in both eyes - total white- out/snow effect. After 15 minutes I called the receptionist in work to come out & I ended up in A&E for 4 hours until it subsided – they then sent me home saying it was probably a migraine. I was so ill for 3 weeks after it - total exhaustion and I could hardly walk because my legs felt weak & sized up. I was called up to personnel for a telling off because I had 3 weeks off for a migraine!
My eyes bothered me on & off then 2 years ago I got hit in the eyeball with a toggle - not a huge knock but it made me go totally blind in both eyes for a few days - then I remained blind in one eye for several weeks and my palette (I’m a painter) was totally grey & washed out – the world was grey!. The consultant that monitored me said my optic nerve was very inflamed & swollen & he gave me a series of steroid eye drops and drops to lower the pressure. I was back and forth having treatment for over a year until it settled down.
Since then on a day-to-day basis I have constant flashing lights that seems to fill my vision to the left - sometimes it's seems to be below/underneath.
I no longer drive at night because I can't see properly when car lights are coming towards me - lights really bother me. I'm an artist and I have periods where my palette looks grey.
I have also developed this constant twitching in my eyelid and eyebrow - irritating! Sometimes my whole eyelid spasms right down and covers over my whole eye for a minute or two! Very embarrassing when you are giving a presentation or talking to someone in the street!!
Back to my recent optician visit - my pressure behind my eyes is really high yet again and my eyesight has deteriorated quite a lot since I saw him last (my mother & aunt have glaucoma so this is always a concern). He asked about my general health, any other symptoms. I told him about the heat intolerance (I have no control over my body temperature – can’t stand the heat at all) the stiffness, numbness, pins & needles in my legs - the electric shock sensations and tightness around my middle - the total exhaustion etc etc etc
He seemed very uncomfortable and started talking to me about optic neuritis saying he thinks that I have been having it since 1998 - he started by saying it could be caused by a virus but he didn't think so in my case. He said he thinks it could be a demyelating condition.
On Monday I spent an hour with my GP (that’s a first!). She had received a letter from the Orthopaedic Surgeon & my Optician. Both recommend an urgent referral to investigate a demyelating disease.
All of a sudden we are talking MS. I feel like my world has been turned upside-down!
I can’t believe that all of my symptoms have never been looked at together! It’s my fault as I have always blamed the car accident for my leg & back problems & the eye toggle accident for my eye problems!
I’m now patiently waiting to see the Neuro – even though it’s marked as urgent I could be looking at April because of the waiting list. In the meantime my GP has ordered an urgent brain scan so that he has this before my appointment.
I have been reading other people’s stories on here. I’m telling myself this can’t be MS because although my coordination is not good - I’m not that bad – just clumsy with things & I trip upstairs a lot but not all the time! I don’t have total body numbness – just in various parts of my leg and my abdomen.
I just don’t know how to feel. I’ve been ill for so long I have almost got used to it! I’m off sick from work to try to get my head around it and feeling guilty for it because I haven’t been diagnosed even!! I’m just feeling very emotional - crying all the time!
Any advice/support – SYMPATHY!!! (Lol) - would be so welcome at this point! xxxxx
PS I did warn you it was a long one!! x