Dystonia - short lived painful spasm
Posted , 4 users are following.
I have been diagnosed with essential and or dystonic tremor. I have tremors, resting and intention, MRI was "normal". The tremors are not particularly noticeable or a huge problem. An odd symptom has been my arms or legs or odd fingers randomly moving very slowly from a static position and then returning to the starting position. Although he had not seen this before the neurologist was not really interested. The point of this post is that for years I have had odd, random stabbing pains but they are very short lived. Today, whilst just sitting the outside edge of one palm became terrifically painful and I could see the muscle beneath twitching. However this only lasted seconds. Everything I read about Dystonia talks about prolonged painful muscle spasms and uncontrollable writhing movements. I can stop my limbs moving involuntarily and I don't writhe or contort. Does anyone think I have Dystonia (I am 72 and these problems started about 6 years ago, no history of similar symptoms or tremors in my immediate family, don't know further back). Anyone have late onset Dystonia, if there is such a thing , or recognise my strange symptoms. I realise that Dystonia is a very uncomfortable, painful condition and I shouldn't complain at my fairly mild experiences but they are unnerving and I would like to know if anybody has anything similar now, or in the past, or if yes if things got worse.
1 like, 7 replies
SteV3 linda83225
Posted
Hi Linda,
I have had Dystonia since about the age of 22, it took professors to actually diagnose what was wrong back then, since I was the only 7th known case in the UK.
There are triggers that can cause Dystonia, many neurologists will probably not inform about.
Take me for example, I had an accident on a ladder, I did not fall - I just twisted my neck awkwardly, the following day it felt like the pain you get when you crick your neck, only I had involuntary movements as well, which at the time confused doctors, thinking I had taken some form of recreational drug (I have never touch that type of drug!). Basically, I damaged part of my nervous system in my neck, and that is the only part of my body that was affected.
That was my example, however, the other more common one is if you have ever experienced a trauma in your life. Some people try and forget about such times, and subconsciously it is forgotten. In later life it can cause Dystonia to rear it's ugly head.
There is more, you can be perfectly fit and healthy, do yoga, etc. Out-of-the-blue, Dystonia will just appear from nowhere.
The problems we have can also be linked genetically, this was not known back in the 1980's, however these days, more people have dystonia without even knowing.
What we called "Writer's Cramp" when I was young is now a form of Dystonia, the actual medical term is "Hand Dystonia". The amount of known people in the UK today is somewhere in the region of 300,000+ which is a big difference from when I was diagnosed.
CT & MRI scans will not detect Dystonic behaviour patterns, I have seen many doctors, consultants and professors over the years, even from the US. There is no cure as such, it can only be controlled with medication. However, with Dystonia it can lead to further issues.
I suffer from Chronic Generalised Dystonia, meaning over the years I have become progressively worse. I take over 40 tablets per day, and every 10 weeks have 6-8 BoTox injections done by a neurologist. These are required to provide relief of muscles that tense up in my neck and shoulder.
These days my mobility is severely impaired, I have to sleep on a hospital bed and have 24 hr care. My eating ability is bad because the dystonia affects my muscles that help to swallow my food. The stomach you can feel like it's being pushed, but its stomach muscle spasms - nothing more.
It is a painful condition, and it's normal to suffer from many cramps, spasms, etc per day. Painkillers at high does can cause other issues, so you are given medication to counteract these effects. It's like a vicious circle, and not one I would wish upon anyone.
Many people think I have Parkinson's Disease, even the medication I take is partly taken by PD sufferers. Most people have no idea even what it is actually called, others think you look and act normal. I cannot eat or drink normally, but this has only come on later in life.
I have met people that have had DBS (Deep Brain Surgery), this is one thing I would not agree to having done because the success rate was only 5% in the 80's. The people I have met that had this done are much worse than me.
As for my age, well I am 56 this year! Believe me, I have been through hell over the years with cancer (and beat it!), nearly died twice from the inside out, from intestines turning gangrene. That was a 11 month recovery. As for dignity, well I lost that decades ago!
I hope some of this information helps you. Spasms, Tremors, etc are basically all the same. Many times muscles anywhere in any limb can start spasming, but I cannot stop them. I got to the stage now where I don't even know muscles are spasming, it's just a daily occurrence.
All the best,
SteV3.
linda83225 SteV3
Posted
Hi Stev
Thank you so much for your reply. Thinking about trauma I did fracture two vertebrae in my upper back 6 years ago. I told the neurologist but again he wasn't interested and dismissed that incident from having anything to do with my current symptoms. Anyway I am not hugely affected by my tremors etc and so will just have to press on and see if things get worse . I do have osteoarthritis which causes pain and several misshapen and permanently locked finger joints. However you have certainly been, and are still going through very tough times. I feel for you and congratulate your fortitude although you must despair from time to time. I wish you better times with perhaps newer more effective medications.
Very best regards and good wishes
SteV3 linda83225
Posted
Hi Linda,
You're very welcome. Trauma is just one trigger, there are others. I am under the Immediate Past President of British Neurology Dr. Geraint Fuller Neurologist Consultant (Try saying that lot when you have had a few drinks! lol), in my case he has always been a consultant that I can approach about anything. He never cuts corners, and will go out of his way to make sure if I have any further issues since I last seen him.
Even his team of Neurology Consultants have been great towards me.
At one point one of the medications I had been taking for over 30 years suddenly stopped being produced, this caused mayhem since it was a medication that my body relied upon. My own doctor thought by putting me on a similar medication would work, with me I ended up in hospital. While in hospital I done my own research about the medication I was on, and looked at alternatives. I done a few checks with my Pharmacist and a Neurologist Consultant I was seeing in hospital at the time.
During my stay, I found the medication that I was given as an alternative was not in my best interest, I could not even feel my hands - this led to me not being able to use my Zimmer (Walk aid). In my findings I found an alternative, nowhere near as bad as a completely different medication - the medication that had been stopped was in tablet form, I found that the same medication was produced in oral liquid form, however, I needed to find if it was available on the NHS.
I made further inquires with my pharmacists and managed to find the oral solution was available on the NHS. Hence, I ordered a prescription from my doctor and got my pharmacist to order a bottle for when I was discharged from hospital. One of my Neurologist Consultant visited me, he had his own patients and was surprised that I had found an alternative while in hospital. Even he had patients complaining that the alternative they were given was not working like the medication that had stopped being produced.
I have always got on well with my Neurologist Consultants, and having one say to me thanks for letting him know there was another solution he could prescribe to his patients, felt like a good achievement on my behalf.
Whether that medication would have ever come to light if I didn't do the research on the Internet I would not know, but I can say that medication helped me. It is not cheap, as I found out when trying to find an alternative, it worked out at about £85 per bottle, obviously free on the NHS (which was lucky). Not as bad as BoTox injections which I have, the amount of injected is around £600 - I certainly would not have them for cosmetic reasons.
BoTox injections with dystonic conditions do work for many people, however, the muscles I have injected are basically that tense and hard, it hurts a lot. BoTox itself is a powder which is mixed with liquid, the fluid is thick - as you can imagine a thick liquid being injected to a very tense muscle would be very painful. Neurologists can see where it is needed because the muscles are that tort, they bulge out of my neck.
I have arthritis in my fingers, not bad enough to warrant more drugs, I'm on enough painkillers as it is. Every morning it takes awhile before I can get my fingers to move without being too painful. It feels like I have been holding something for hours, and my fingers are just cramped in one position.
Me, despair - not so much now. I had a huge nervous breakdown about 3 years ago, yes, more tablets were prescribed. I broke down due to a number of things that had happened during my life, not to me personally - but what I had witnessed. I had bottled it all up for decades, and tried to keep everything to myself - I now know what I did was wrong. I am lucky to have such an understanding family.
Linda, Tezes is on Clonazepam, which is one of medications I have been on for years. It doesn't stop tremors or involuntary movements but it does help to an extent.
Another is Madopar - the doses of this drug you have to be weaned on to.
Artane is the one, that was stopped being made in tablet form, the alternative is Orphenadrine mainly for muscle spasms and associated pain.
Regards,
SteV3.
Tezes linda83225
Posted
HI Linda
i was diagnosed at 58 with what you might call late onset Dystonia.
Firstly i would say its imperative that you are seen and examined by a Neurologist who specialises in movement disorders.
I has started with tremors, all limbs and Jaw also involantary twitching/movements. I had symptoms and various tests, scans etc for 18 months before finally being seen by a movement disorder neurologist. I was told that the MRI /DaT scans etc are to rule out other conditions that present with similar symptoms such as parkinsons.
I was also informed that Dystonia can be hiredatory and or activated by trauma or sustained periods of stress. The latter applied to me.
At the worst my tremors affected my ability to drive, apply make up etc. I had balance problems, fell down the stairs twice, hit my head on door frames that kind of thing. The neuro prescribed propranolol for the tremors and clonazepam as a muscle relaxant and to help me sleep. For a time it affected my speech and swallow, tests showed my vocal chords dont close properly. After therapy my voice is much improved but i still have to stay away from very dry food and drink lots of water etc.
Tezes linda83225
Posted
sorry i lost connection,
So basically i have dystonic tremor and cervical dystonia - i do not have botox as i manage with the medication, heat wraps for my neck and pain relief when needed.
I have osteoarthritis in my lower back and chronic migraine but thats me.
I hope you get on ok but as i said pkease get a physical examination from a movement disorder specialist as they can provide an accurate diagnoses. if you want more info let me know. The Dystonia Society are also very helpful xxx
linda83225
Posted
Hi Tezes
Thanks so much for your reply. The neurologist I saw is supposed to be a movement disorder specialist and it was a private consultation through insurance. He didn't think any more tests were necessary. I can't see my GP referring me to anyone else, unless I get dramatically worse, on the NHS.At the moment I don't feel I'm bad enough to make a fuss. I just wanted to have my symptoms recognised as a named condition and to know if I am likely to get worse so that I can make appropriate plans. However from all that I've read these neurological conditions are very difficult to identify precisely so I am resigned to waiting and seeing! When I also read how much other people, including you, have to put up with I feel I should just keep quiet for a while.
Very best wishes to you and again hopefully research will come with some effective treatments.
Linda
Tezes linda83225
Posted
Linda, i mentioned the specialist Neuro because of my experience, in a nutshell:
Gp visit first, she said it looked like i had Essential Tremor but referred me to a Neuro.
Neuro next who sent me for all the different scans ans muscle tests, then said she wasnt sure what i had - did i just want to leave it and see how i get on or be referred onto a movement disorder Neuro, i chose the latter DOH !
Lastly i saw the specialist Neuro in London - within 45 mins of her checking my test result, notes and physically examining me she had diagnosed Cervical dystonia and Dystonic Tremor. The physical exam included observing my movements and responses etc. Although dystonia and ET are both neurological movement disorders they are very different conditions and the signs and symptoms present very differently in dystonia to essential tremor as does the actual tremor itself. for eg A dystonic tremor is jerky an essential tremor is smooth.
The whole process from visiting my GP to diagnoses took 18 months and was stressful in itself especially the brain scans as i have brain tumours in my family, thankfully they were clear as they are if you have ET or Dystonia. i was diagnosed 5 years ago.
(There are other dystonia symptoms that have development over time but too many to explain on here)
So this is why its important to achieve an accurate diagnosis so you know what you are dealing with now and how it might progress in the future and the treatments you may require.
i hope that is helpful, im guessing as your neuro was a private consultation you can ask for a second opinion, all the best x