My battlefield

My battlefield

Oh my I have 2 types of dystonia I have been battling with my husband on my own we have had no support no medical treatment my body is no longer mine I suffered so much heart ache and pain through professionals I grew up trusting I have made to formal complaints my husband is going to the hospital to face this dreadful situation I can't go because my health has deteriated to much my life has been ruined rang social services several times nothing been to doctors confused and no treatment changed hospitals because 1 neurologist said I made animal noises I was told at the pain clinic I had the worse kind and it was rare I have not herd my own voice in2years and that's when I got married in 2012 I feel like I got brain damage I forget most days and confused I am struggling because there's treatment but there is no cure but yet I can't get treatment .

4 Replies

  • Hi Juliet, so sorry you are having a rough time. I know the feeling hun. Keep on at Social Services, you should be getting help, Do you get Disability Living Allowance. Go back to your doctor's and ask them if they could get social services out to see you. I get confused, fall, chronic pain. Go to fnd hope site, I go there and talk to people with the same condition.n I am here for you if you want to talk.

  • Hi thank you for your kind thoughts I am so stuck in a war zone to hear that I have a more complicated illness and a load of useless professions leaves me in despair thank you for your advice.

  • Hi Juliet, I am so very sorry to hear how hurt and wounded you both have been at the hands of so called caring professionals. I cannot even imagine. I think we all mostly have been at one time or another. It just causes frustation and lack of trust. I know I have brain damage, and I believe that is what caused mine. A brain surgery followed by a spinal fluid leak that almost killed me. The dystonia came shortly after that. I lived for 2 years in a chair, having dystonic storms contantly, drool coming from my mouth and unable to speak a word. And yes the pain was unbearable. Only to be told it was a conversion disorder by a lead neurologist, after 5 others said it was dystonia. I was refused treatment. Praise the Lord, I found a wonderful Dr. an internist after that who tried me on Tegretol and the lights went back on in my brain. I was able to resume a somewhat normal life again. Over the years it has gotten bad at times and he changed medications, sent me to wonderful neurologists, and now after just going through another 3 month spell just like in the beginning, I am stable again. I was put on Sinemet and I have not had a storm, episode, seizure, whatever they are called for over 2 weeks. Was having up to 11 a day. My husband had to carry me and put me on the toidy. Now I am up and walking and talking again. Long and short of it, is there is hope. Many different things work for many different people. I have in the past also responded well to primidone, and topomax. Do not lose hope. Seek a different Dr. and keep seeking. I will keep you in prayer. Please do not hesitate to email if you would like to. Also, I have found great support on the functional neurological group on facebook. You are not alone. There are so many like us. My email is God Bless you today and I pray you have a pain free day. Cathy

  • Hi thank you for your kind thoughts and I will take you advice I am so devestated what has happened I am so glad that medication has put things wright for you I hope things go well love julie and thank you.

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