I decided to write this blog after my recent diagnosis of Primary Lateral sclerosis. As it is a rare condition, it is difficult to find personal accounts of what day to day struggles, sufferes have to deal with.

I realise that each person is very different, and like Multiple Sclerosis, the prognosis for each individual is wide and varied.

I am a Nurse, who has spent much of my working years, in the Neurology field. Just as a coincidence, I am also married to a neurologist. This has meant that I have a fair bit of understanding about neurological conditions (except PLS ).

My journey to the diagnosis has been long and hard. Probably harder than you would expect, considering my back ground. I have spent 2 years seeing a friend and colleague about my increasing lack of mobility. Instead of being helpful, I was labelled a "Neurotic Neurologists wife". Not to my face , but certainly hinted at in Clinic letters. When I mentioned that I had trouble getting up off the ground and going up 1 flight of stairs, I was told that I had no muscle weakness! This was despite his diagnosis as a musle weakness syndrome. He had not even examined me thoroughly for 9 months.

I finally said mt goosbyes to him and took myself out of town and found a Neurologist 2 hours drive away. He examined me and found evidence of weakness and spasticity. After another MRI just to rule out MS, he explained that I probably had PLS, but they would watch me closely as it can sometimes turn out to be ALS.

I will happily take the PLS over ALS anytime.

My husband has been miserable. Other Neurologist friends have rung me to say how sorry they are. It feels like a death sentance, despite the articles on the net saying that it is a benign illness. If you read between the lines you see that it is far from benign. I am only 48.

I have also read that it often changes into ALS. No wonder my husband is so sad. I keep telling myself that he sees only the worst of cases and the people doing well are at home and not visiting the clinic. But that only helps on the surface. He had 2 patients with ? PLS nad they both died reasonably quickly after it changing to ALS. I realise that that means that it was probably not PLS in the first place. But what if that is me.

I had convinced myself last year that I had a conversion disorder. I started seeing a psychologist, but he said that I certainly did not. It was thanks to him that I ditched my first Dr. Find someone with a brain he kept saying. Bless him he saved my sanity.

So my journey has just begun.......

I had an appt with the neurology Nurse at the hospital this week. She just haopoens to be a good friend. She was great, but after the meeting, I relised that this was not a bad dream. It is very real and very scary.

I am sad for my husband, sad for my children and all the rest of my family. I know I have great years ahead, but my dreams at the moment feel shattered. I was going to be supergran, when my children had children of their own, but no longer. I can hardly keep up with my own parents already.

I am off to England in 2 weeks to see my eldest daughter who is soon to be married. I am excited but frightened. I know I will manage, but will need assistance at the airports. I am a Nurse, I like to be the helper. Not the one being helped. I have a lot of changeing to do in my head. I better get started..........