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TOPIC: Curious to understand my Dystonia

Curious to understand my Dystonia 1 year 4 months ago #4026

  • KaryssFIN
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Hi all,

So back story, I was told I have Dystonia after years and years of hospital visits etc from early childhood. At 16 got told I have Dystonia.

Can they diagnose this without MRI etc type tests I keep reading about? I have had none of the tests.... but been supplied with different medication which never worked anyway. The only drug that worked was discontinued when i was 8.

Reading through my medical notes from birth 4 different doctors state I have Dystonia.... but itll never progress. It has.. Anyone else had this happen?
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Curious to understand my Dystonia 1 year 4 months ago #4027

  • Supergran
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I got diagnosed without these tests the doctor simply watched my muscles for a period of time and kept telling me to relax and walk across the room. I found that the more I relaxed the less control I had over my muscles and then came the diagnosis. Like you the meds are not working for me and when they are tried they cause more problems than they fix. The problems they cause are potentially life threatening....bladder stopped working, lungs really struggle and have been diagnosed with both cardiac and respiratory distress and so my care plan only involves meds for emergency care. I am in a wheelchair and my diagnosis is generalised dystonia severe end spectrum.

Life is not ideal but it is ok. Life choices have to be different, triggers have to be avoided but there is a life and that is important and something I feel I have to be grateful for...up to a point and most days! I do however have my moments! The best advice is to stay strong ,know that you are not alone, have as many moans as you need to and do your best to build a life. I call dystonia my jealous friend because if anything happens in my life....common cold, stress, pushing myself too hard etc then dystonia will have none of it and does come out to play big time. It also introduces its new friends to me from time to time and that can be nasty as well for example esophagus spasms...stomach starving hungry but the spasms in my throat wont allow any food into my stomach until the spasms pass. then I get my own back by eating a man size steak diner LOL...

Take care and God bless xxx
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Curious to understand my Dystonia 1 year 4 months ago #4028

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Most of my testing was done at a very young age so I am not sure what they did to say what I had.... even though I had my entire medical record next to me I cant read the doctors handwriting xD
I've had it pretty much since birth, I was a failed forceps cesarean with Mild asphyxiation. It was horrendous as a child, but the positive side is as I grew up I learned to cover it up/disguise spasms etc 26 years in total. I am lucky (and fully aware of this) that I am not on the severe end, not sure what mine is... Idiopathic was one word I saw mentioned. Mainly in my hands, hard to write or do delicate tasks, cramping and twisting. Last 5 Years it moved to my neck so on bad days it is hard to sleep as thats when mine comes out to play. Even more recently I developed vocal tics/twitches and get stuck on words (always in public) and I am seeing more leg involvement too =( Toes cramping really hurts. My concern is lack of energy and slowness of my movement on top of all over symptoms.

Medication made me lose my memory.... still hit and miss now to be honest. I refused the next form of treatment as it was epilepsy drugs that weirdly can cause seizures. I didnt like the risk factors involved.

Its annoying when people dont understand it... still get people calling me diseased and saying "Its all in your head" well yes it is, but not in the sense I can suddenly stop it all xD

Gotta love steak!! Best meal to have =) Thank you for your kind words, Take care xx
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Curious to understand my Dystonia 1 year 4 months ago #4029

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Have you had the genetic testing done? I was assaulted and sustained a neck injury. I had really good physio for around 5 years and was able to hide it for most of the time. I then 12 years ago got breast cancer and was given stemitil, an anti sickness drug that should not be given to you if you have dystonia and it progressed from there. I can look quite normal at times but if I do too much, get too tired or do anything that puts up the adrenolin levels it comes out to play big time! so there is at some level a way of controling things and to be honest I have no choice than to make the decisions to work work with the condition because if I dont then the price is pretty big with spasms/tics/speech interference and eating problems. So I count my blessings for the things I can do. I push my luck fairly regularly to see what happens and I have pj days when things dont go my way. Most important is I dont given myself a hard time.

I have so much respect for people who live with this. There is no right or wrong way to cope there is just getting through and having as many good days as you can. I love my heat pack for the painful times, it works wonders for me. I have a shiatso massage chair which can be painful but gets the knots out of muscles that have been spasming too much. When you have sustained muscle spasms you can get air trapped in the muscle and like people who like or feel they have to crack their knuckles there is a crack that can come from the muscles and although this sounds strange its heavenly. I recently got a homeopathic massage to my intercostal muscles and he managed to crack about 5/6 muscles. My peak flow went from 180/200 to 450 within a few hours and I havent looked back as when the breathing gets difficult the peak flow goes down and the pulse rate goes up...around 160....and thats a 999 trip to hospital and straight to resus.

So the point of sharing this is for you to try out as many non chemical things as you can and you will be surprised how much relief you can get. I must stress though this has to go along with being kind to yourself as you are worth it and if you are struggling with this I like to picture how many times the woman of the house has been in the kitchen/garden/shops while the man has been in front of the tv! Does he give himself a hard time????? you answer that one

take care
xxx
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