Dystonia

[BobNJ]

I'm 41 Yrs old, spouse, family man, with 3 children. To begin, at a young age, 22 yrs ago I was diagnosed with Parkinson's and given Sinement, carbidopa/ levodopa.

Struggled through the years, but was able to maintain, had my girl, had 3 beautiful children, ran my business, bought our home, invested in properties, life was GOOD!

But through all this...I always struggled...body stiffness, body/muscle cramps, throughout my body, and enduring pain. I'm muscular and lean.

Fast forward to 2024, this year has been the worst ever, I was hardly sleeping, scared to eat, lost 35lbs, taking pills every 2-3 hours!

I nearly died!

My father saved me! Took me out of my home, and is helping me battle this sickness I have

We changed doctors, did exams, was given a new prescription.

He diagnosed me with Dystonia, so I guess I was misdiagnosed since the beginning. He gave me a prescription for Rytary. After taking it for a few months, it does NOT help me! It was worse...improve Libodopa/carpadopa...it tightens me and I cannot think, read, focus on anything. Rytary made my paranoid, anxious, no control!

After researching, Mucuna Pruriens , is what is helping me think clearly...can anyone relate?

[Rkai]

Can relate as have cervical dystonia and had a sister with Parkinson's. I have managed with pregabalin 250 grams per day.

[Van604]

Yes, I was diagnosed with Parkinson's/dopa-responsive dystonia 7 years ago because I had a good response to levodopa. Is it dopa-responsive dystonia they have now diagnosed you with? The effect of levodopa can lessen over time so maybe that's why they tried something else. In my experience, it's trial and error with this stuff and these conditions are harder to diagnose than doctors will admit. They changed my diagnosis for no good reason to FND, which has really impacted my life.

[eviedotty in reply to Van604]

I have lived with dystonia for more than twenty years then right out the blue one doctor decided that it was FND, further tests have been done which make it hard to argue against dystonia. MRI scans showed a lesion that has bled around the basal ganglia area and that medically confirmed original cause of dystonia. For me it progressed over the years and more parts of the body became involved. Now I strongly recommend that if there is a part of the body giving you issues go to the doctor who specialises in this. I had a vision issue and the neurologist put it down to stress and tiredness. I went to the optician and was thoroughly checked over and was sent to the hospital as an emergency because of what my eyes were doing, outcome as in long story short, there are six tiny muscles around the eye ball that enables full vision and I have two in the upper right eye that are now dystonic and can make life challenging. The optician made a pair of tinted plain glasses for me and that helps manage many challenges. I have chest wall spasms that seriously challenge my ability to breathe. I went to a respiratory physio and long story short again he re positioned three ribs back into place and my breathing issues were sorted. I have so many stories of this nature and I am doing well but its because I am very careful with who I trust medically. More recently my local hospital have been training the doctors that a presentation of dystonia is a reaction to drugs and this has caused dangerous levels of problems numerous times. Just a few weeks ago I put an ambulance crew out my house because they stated that an oxygen level of 84% was down to the batteries in the pulsometer needing replaced, with significant spinal issues they decided they would take me out to the ambulance in a chair and not the trolley as is normal, they basically talked to me about my level of anxiety and stress suggesting that this was the issue but I knew if I went with them I could be in a lot of trouble medically. The next day my low oxygen level caused me to fall down the stairs and fracture a leg. I was taken into resus and spent seven hours getting my respiratory system stabilised and then was asked about going home, I said I know you have treated me for dystonia but I came in with an injury from the fall on the stairs, they xrayed me and found the leg bone that was fractured. Now the neurologist has decided that this is FND and wrote to my doctor and I asked the doctor what are my symptoms because everything has been attended to and I haven’t made any statements about other symptoms, there are none mentioned on the letter from the neurologist, so what is my care plan, well if you have no symptoms there wouldn’t be a need for a care plan so in short I have FND with no reported symptoms and no care plan.

[Van604 in reply to eviedotty]

Yes, this is the kind of thing I've been experiencing too. I got hit on the head by the guardrail of a wheelchair lift and the hospital said I had concussion, but the neuropsych, who only saw me on zoom, said I didn't. The hospital found a thyroid problem that needed follow up. I finally got to see an internist and she told me I'd seen too many doctors and that I was well-served by the neuropsych. Refused to examine me or do any tests. So, in other words, go away you crazy hypochondriac! I also was finally found to have a heart blockage, discovered when I tried to join a clinical trial. The FND label is a curse!

[eviedotty in reply to Van604]

I during Covid had some issues with what it had done to my dystonia and the relevant story here is, I was feeling better and decided on a pamper session, so shower nails etc and thoroughly enjoyed being able to do some proper self care again. I was done and started to tidy up when a brutal spasm in my right foot went through my body and catapulted me off the toilet seat that I was using for a stool. The outcome was a cracked rib from hitting the cupboard handle on the way down and a knockout head injury. Now I put myself to bed for a while made a drink and took pain meds in preparation for the pain I expected to come. Jump the story forward and for around four weeks or more I started to get symptoms and did consult a doctor who needed a CT scan to be done and I was sent into the A&E four times with significant symptoms, projectile vomitting, confusion, etc and four times they treated me for dystonia triggered by this fall but did not assess the head injury. I can’t actually believe this happened but it for me is now a funny story so I will tell it. I am on the phone to out of hours emergency care and felt unwell but couldn’t explain why, the call responder asks have you fallen recently or anything happened so I explained the fall etc that went with the story, she then says ok lets take some details and asks,name…..address and here is were it starts to go wrong lol, am thinking why do you need to know what is in my wardrobe ? So I tell her….no I don’t own a dress! I don’t like dresses and I don’t wear them ha ha, well she replies that’s ok do you know were your house is, oh yes I know that, its in my street….do you know what your street is called?….yes its my street like my house is in my street and your house will be in your street, omg I knew it wasn’t going well and attempted to terminate the call and told her I can’t answer the questions you are asking so I will call back when my son arrives and he will tell you what you need to know, she would not allow the call to be terminated and had an ambulance already on the way to my house, I used my mobile phone to call my son to tell him there was a lady on the phone and she is sending an ambulance to the house. Jump the story forward and I didn’t get the head injury assessed at the hospital but I was alerted to how often my doctor was sending me in and I really lost it with this man asking him why he had treated a head injury as dystonia and did he realise that without this assessment my own doctor was working blind because without the scan it couldn’t be confirmed as delayed concussion or a bleed from the lesions I have in my brain. We discussed failed discharging and counted eight in total and I made him aware that if I projectile vomit again when I get home that will be another failed discharge and he shut up and I refused to go back in and decided to take my chances.

[timgann]

All the drugs can have bad side effects. Have you been offered botulinum toxin injection’s either instead of meds or in combination?. Find yourself a movement order neurologist. Lots of info on dystonia foundation in US or Dystonia UK.