Real People. Real Stories.

My FND journey may have begun much early than diagnosed.

Therefore, I will briefly start at the beginning.  As I a child, I used to ache so much especially my legs so much so it would wake me at night and I would tie my nylon scarf around my legs to get some relieve, obviously I know how dangerous this is now.  My parents dismissed this pain as growing pains.  However, many years later a GP told me that I had hypermobility and that may explain certain pains.

In addition, I had reoccurring tonsillitis

I suffered regularly from stomach problems and when I was about 18, I was diagnosed with IBS.  Then in my thirties, Diverticulitis arose.

The company I worked for bought in yearly medicals and after my medical, the doctor sent me for tests and I was diagnosed with Fibromyalgia.  This was in my early twenties.  However, I still managed to work, having a number of different jobs from bar staff to car mechanic to stevedore.

After the death of my baby daughter, Amy my second child in 1997, I did suffer from depression and it did take me a very long time to work through the grieving process, however, I took comfort that I was blessed that I had had twelve precious weeks with Amy.  Sometimes, my attitude of finding a positive out of a negative situation would shock or astound people but that was part of my personality.  This is why when the first neurologist in October 2010 just dismissed me stating I must be depressed, it upset me as she had just looked over my medical records, noticed I had previously suffered from depression therefore I became “labelled” and refused to carry out any tests such as an EEG.  To be honest, I did not have a problem with her diagnoses, just the way she delivered it.

In 2008, I began to suffer from excruciating headaches, so severe I honestly wanted to rip my left eye out, to be honest I was used to the aching, the pain, etc that I have suffered throughout my life and had natural births without pain relief but this pain was quite crippling.  I was diagnosed as having Cluster Headaches and prescribed codeine and paracetamol, which did not help however, the headaches, came in cycles, and happened mainly at night, so I still managed to continue my life as normal.

I was a nursery nurse, had just finished my Foundation Degree in Education and Care, and was working towards my career goal of working with families with children with disabilities and/or additional needs.  My ultimate goal was to become a Portage Worker, which many may think is not a dream career, many may dream of celebrity status or stardom but for me, that was my dream.  Unfortunately, now I have been informed by a Specialist that I may never be able to work in this type of field again due to my symptoms.

A few months before my big FND bang, I had noticed my lips feeling funny, somewhat tingly numb and the left side of my mouth began to drop.  However, it lasted only a brief period and I dismissed it as being a bit weird, I was far too busy to go the doctors and did not have any other symptoms at that time.  Then in the September of 2010, I had a shaking attack at work and thought it was my blood sugar, one of my colleagues suggested getting checked for diabetes.  However, I had not been to the doctors for two years so I thought I would wait and see if it happened again.  In addition, I also noticed when writing the children’s observations, my hands had a tremor, again I just dismissed it.  Around that time, my headache began and, it was continuous 24/7.  Around the third week of this persisted headache in the October whilst at work, I had a very strange sensation of the right side of my brain.  I can only describe as a ‘fuzz’ then my body locked up, I was unable to move, apart from jerking, my speech was slurred and apparently I was cursing which I would never had done in the nursery.  One of my colleagues managed to drag me out of the room and my manager later told my GP that my hands were locked into a strange position.  To be honest, I really cannot remember everything, and it still upsets me that this happened in front of my colleagues, and worse still they had to write reports, on this ‘incident’ that happened.

Along with the jerking, tremors, headaches, the speech problems, which the neurologist termed Functional Speech Disturbance, I began to experience seizure like episodes, which my GP and another doctor thought look like a form of epilepsy.  Other symptoms including gait, mobility, contortion episodes, eyes and photosensitivity, Tinnitus, Raynauds, co-ordination and balance bladder, memory problems, dizziness, etc, etc.  One of the worst is the exhaustion.

In the beginning, I believed I would be back to normal in a week, two at most.  Then it was by I will be better by the Christmas, then the Easter, until it dawned on me, it wasn’t going to happen like that, and I began to sink into a depression.  My GP is lovely and has been learning with me along the way.

I am the first to admit that I probably tick most if not all the boxes for this being physiological however; I do not believe it is as I know me and believe I have dealt with passed issues.  If it were, I honestly would be the first to agree.  I am going to go down the CBT and physiological routes, as I am willing and open to try anything in the hope it works.  I do think that I was overdoing it and surviving on very little sleep, which isn’t healthy for anyone especially when you have Fibromyalgia before I had my ‘big bang’.  However, if this was the major or only cause after two years of being unable to do anything, I honestly believe there would have been some sort of improvement.  Currently, I am waiting the results of an EEG and in depth blood tests after seeing a different neurologist at a different hospital.

I am called Maria, I am 43, I live in the northeast of the UK, I am a mum, I am a partner, I am a University graduated, and

I was a nursery nurse working towards a career in helping, and improving people’s lives.