My name is Zoe. Some of you may remember me from a couple of years back when I first joined the MS Society. I am now having even worse symptoms but am still stuck in limbo, here is my story...
My neurological problems started in October 2010, whilst I was in hospital with a severe kidney and urine infection. Everything came on very suddenly, but from what I understand, M.S. can be triggered by an infection.
No-one seemed to take my symptoms very seriously at first but I declined rapidly and I was left barely able to walk as I couldn't feel my feet and didn't know how to move my legs, they felt heavy and disassociated from my body-very strange feeling, with tremors in both my hands and my right foot, disorientation and loss of balance, blurred/double vision, pins and needles/burning pain, difficulty swallowing and my bladder stopped working (urinary retention)...to name but a few!
I had a neurological examination, which I was told was abnormal and I was referred for an MRI of my brain and also had a tilt table test. There was some question over two small patches in my brain on the MRI, but these were eventually put down to migraines. I had nerve conduction studies also around this time and these were negative, because of this, my Neurologist made assumptions about my illness and wasn’t prepared to do any more tests, so I was left to ‘watch and wait’.
After being discharged from hospital, I found that after walking for a very short time, my right leg became heavy and my foot turned inwards, without me realising and started dragging, I often shook and felt faint and lost co-ordination and balance (particularly when I have become too hot).
Despite everything I was trying to cope with, I made the step to go to university in September 2011. I settled well and had carers twice a day at my halls. Unfortunately I contracted the flu 2 weeks into my course and was bedridden with it for some time. The night I decided to try and get back into my studies and go to see an imperative performance for my course at the Uni theatre, I took a very sudden turn for the worse.
It started with violent shaking which lasted hours and I was also very un-coordinated. I fell about all over the place as if I was drunk (but obviously hadn’t touched a drop)! By the time I eventually got back to my halls, I was very incoherent and un-coordinated and wasn’t even able to put my key in the door of my room!
My sisters came and took me to the local hospital (just across the road from my halls) but by this time I was barely able to stay stood up without support of another person. The doctor in A and E was very concerned about me and did some examinations, he suggested my symptoms were that of a severe MS relapse and I should get an MRI referral asap from my GP. He wrote a letter to my GP for me to take as soon as I could. (The hospital didn’t have neurologists based there so no point keeping me in until tests had been done).
Later that night my condition worsened to the point where I slurred my speech, my mouth completely dropped and my whole body went floppy like a rag doll, so I couldn’t move my arms or legs at all. An ambulance was called and I was blue lighted to the nearest specialist hospital, as it was feared I had suffered a stroke.
To cut a long story short, I was seen by neurologists at the hospital and no one knew what to make of me, but acknowledged it was very severe. I had another MRI of my brain, which was inconclusive and also further nerve conduction tests, also inconclusive. It was therefore put down to the fact that my symptoms were functional in nature and I would gradually improve and make a full recovery!
Six weeks later, I had been transferred to a local hospital to my home and with the help of physio, had taught myself to walk again so was discharged home.
The next few months were very up and down and I still couldn’t walk very far at all without foot drop. The other symptoms also stuck around to a slightly lesser degree and every time I have an infection/viral illness or am very tired, my mouth droops without my control.
Just over a month ago I had another major relapse and was taken to hospital once again, with the same symptoms as before (I had woken up unable to move my arms or legs and my face had dropped severely). Yet another MRI of my brain was taken but this time they mentioned a patch of what could be demyelination, but they couldn’t diagnose anything from it. No other tests were performed and I was once again told my symptoms were ‘functional’, except this time I was told they believed them to be of a psychiatric nature and referred me to the local mental health team!!!
I went along to the assessment and I am pleased to report I was given a clean bill of health from them and have a letter confirming that they believe my illness is not of a psychological nature!
So, I am now in more of a limbo than ever! My GP does not at all understand and the last twice I have been in tears after my appointments! My symptoms are becoming worse and more frequent and I really don’t know what to do next.
I would appreciate people’s feedback and would also like to know has anyone else had the mouth drooping when they have had severe relapses?!
I feel I should be pushing for a spinal MRI or at least something else, this has now been two years and instead of recovering, I am worsening. I do have periods of remission in-between these very severe attacks but these periods are coming very few and far between.
The illness is beginning to take over my life and I just wish I knew what was going on. I have agonising back pain every day (not a muscular type pain), after only a short time walking both my feet now turn inwards and my legs bow beneath me, my hands are numb and feel like cotton wool or like they are fizzing, I have no grip and often need to be fed. My hands/legs/body tremor. My legs are weak and feet feel ‘fluffy’. I have overwhelming fatigue and no energy whatsoever. My mouth drops at any time when I am over tired or have extra illness to cope with (e.g. urine infection). My bladder keeps going into retention and I keep getting UTIs because of this….
Sorry I'm waffling! Sorry this is such a long post, please do message back and let me know your thoughts, I would really appreciate them.
Love and best always xXx