Long term undiagnosed illness

I just want to give anyone who has a long term undiagnosed illness hope. I became ill over night in 1988. Went to bed a normal 29 year old and woke unable to control my 4 limbs and in agony with my left arm and leg.

After years of testing won't bore you with the details. It was a neurological condition. I knew all the things I hadn't got but no one could give me a name. Because of no name could never claim benefits. But I was lucky I had a wonderful husband who said we will live our life to do what you can do. Our daughter was 4 and our son 6 months old.

Unfortunately my husband died aged 47 with malignant melanoma grade 4. I was 45 our children 20 and 16. That was 18 years ago.

I have over the years seen the top neurologists and the tests in the late 80's and early 90's where quite barbaric but I didn't care what was done I just wanted to get better and have a name.

But as a family we lived a full life. Because of my wonderful husband I have coped since his death in 2004. I looked after both my parents and mother in law until my mom was the last to die in 2017.

I moved to live nearer to my children and am under the care of a brilliant neurologist. He had my blood genetically tested which it had never been done before. Genetic tests has come a long way especially in the last 5 years.

On Friday after 34 years I finally know what my neurological condition is and it's rare. It's a hereditary condition. My wonderful neurologist put me on a tablet 2 years ago to stop my seizures and it was like a switch had been turned off and made my life so much better. Still have all the other problems but it was the seizures which effected my life the most.

So anyone who has an illness that has no name never give up hope. Medical science has come on so much in the last 34 years. My condition wasn't know off all those years ago. I am now 63 . I always knew what was wrong with me wasn't killing me as I would have died years ago. Also 2 years ago found out I was born with a heart defect. Which is separate from my neurological condition.

The health care I get here in the north west is excellent. And I can never thank my neurologist enough for having the tests done.

I could write more but you don't want to hear my horror stories.

If you are ill never give up hope and live your life to the full and never let anyone tell you you can't do something. Because of my wonderful husband we lived our life to the full and because of him I still am.