Parkinson-like freezing - Getting stuck
Moderator: talkhealth
Parkinson-like freezing - Getting stuck
One of the symptoms I get on and off is what I can only describe as parkinson-like freezing. I go to move but get stuck. This happens when I try walking particularly when I've overdone things. I get up to walk and take a few steps but then get 'stuck', or I turn a corner and get stuck.
I have seen numerous neurologists during the first couple of years of my nearly eight year illness so I'm pretty sure it isn't Parkinson's, and it is very much related to over exertion. I've read that parkinson-like symptoms have been noted in M.E epidemics. Is this a common symptom for people with ME/CFS to have? Is it one that the doctors here have come across?
I have seen numerous neurologists during the first couple of years of my nearly eight year illness so I'm pretty sure it isn't Parkinson's, and it is very much related to over exertion. I've read that parkinson-like symptoms have been noted in M.E epidemics. Is this a common symptom for people with ME/CFS to have? Is it one that the doctors here have come across?
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Dr Charles Shepherd
- Posts: 215
- Joined: Wed Aug 07, 2013 11:30 am
Re: Parkinson-like freezing - Getting stuck
You are quite right to point out that there can sometimes be uncertainty and misdiagnosis in relation to Parkinson's disease - as the research abstract below illustrates:
Mov Disord. 2011 Jun;26(7):1337-40. doi: 10.1002/mds.23563. Epub 2011 Mar 29.
Decades of delayed diagnosis in 4 levodopa-responsive young-onset monogenetic parkinsonism patients.
Ling H, Braschinsky M, Taba P, Lüüs SM, Doherty K, Hotter A, Poewe W, Lees AJ.
Source
Reta Lila Weston Institute of Neurological Studies, Institute of Neurology, University College London, London, United Kingdom.
Abstract
BACKGROUND:
We report 4 patients with young-onset monogenetic parkinsonism, each of whom was misdiagnosed with either a psychogenic movement disorder or chronic fatigue syndrome for 10 to 23 years after the onset of their first symptoms.
RESULTS:
Once the diagnosis was eventually made, they all had a rapid and excellent response to levodopa, albeit with the early appearance of interdose dyskinesias in 3.
CONCLUSIONS:
We discuss possible reasons for the missed diagnosis despite the relentless progression of their motor handicap. DAT scanning supported the revised clinical diagnosis of parkinsonism. © 2011 Movement Disorder Society.
Copyright © 2011 Movement Disorder Society.
Although you have previously been reassured by a neurologist about PD I think you ought to be re-assessed
So I suggest you ask your GP if you could have a referral to a hospital based NHS service for ME/CFS
Contact details for all the UK NHS services can be found on the MEA website:
http://www.meassociation.org.uk
Mov Disord. 2011 Jun;26(7):1337-40. doi: 10.1002/mds.23563. Epub 2011 Mar 29.
Decades of delayed diagnosis in 4 levodopa-responsive young-onset monogenetic parkinsonism patients.
Ling H, Braschinsky M, Taba P, Lüüs SM, Doherty K, Hotter A, Poewe W, Lees AJ.
Source
Reta Lila Weston Institute of Neurological Studies, Institute of Neurology, University College London, London, United Kingdom.
Abstract
BACKGROUND:
We report 4 patients with young-onset monogenetic parkinsonism, each of whom was misdiagnosed with either a psychogenic movement disorder or chronic fatigue syndrome for 10 to 23 years after the onset of their first symptoms.
RESULTS:
Once the diagnosis was eventually made, they all had a rapid and excellent response to levodopa, albeit with the early appearance of interdose dyskinesias in 3.
CONCLUSIONS:
We discuss possible reasons for the missed diagnosis despite the relentless progression of their motor handicap. DAT scanning supported the revised clinical diagnosis of parkinsonism. © 2011 Movement Disorder Society.
Copyright © 2011 Movement Disorder Society.
Although you have previously been reassured by a neurologist about PD I think you ought to be re-assessed
So I suggest you ask your GP if you could have a referral to a hospital based NHS service for ME/CFS
Contact details for all the UK NHS services can be found on the MEA website:
http://www.meassociation.org.uk
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association
MB BS, Honorary Medical Adviser, ME Association
Re: Parkinson-like freezing - Getting stuck
Unfortunately my GP will not refer me to a neurologist as I saw so many at the beginning of my illness. As far as he's concerned that area of investigation was been exhausted /5years ago.
I was referred to the Sussex CFS/ME service in 2006 after a neurologist diagnosed me with ME/CFS, but the doctor there assessed me and thought something had been missed due to my unusual symptoms. He referred me to the National, Queen Square where I was basically accused of wasting their time by one neurologist and treated with near contempt by others. It's a long story.
I did ask to be referred back to the Sussex CFS/ME service last year. The problem is they have downgraded their service. There was no one to one assessment available. I was sent to a 2 hour introductory course about GET and CBT. The physios who ran it were virtually begging the 15 or so people who were there not to go any further as they had such a long waiting list. They only offer 2 hour group sessions involving CBT and GET, and no one to one assessment is available apart from a phone call. The service is run by physios and a psychologist no doctor is employed. To be honest a 2 hour group session is beyond what I'm capable of and I could see little point in going further when no assessment would be made by a doctor, so I withdrew from the service.
I've just accepted that my stranger symptoms like my 'freezing' are a part of my ME/CFS mainly because it seems to be linked to over exertion, but also because I no longer have the fight to keep pushing my GP for a reassessment. The more I push, the more he tries to say I've got health anxiety! Like many people with our illness, I feel very let down by the medical community. A diagnosis of ME/CFS virtually guarantees any new symptoms will be ignored.
I was referred to the Sussex CFS/ME service in 2006 after a neurologist diagnosed me with ME/CFS, but the doctor there assessed me and thought something had been missed due to my unusual symptoms. He referred me to the National, Queen Square where I was basically accused of wasting their time by one neurologist and treated with near contempt by others. It's a long story.
I did ask to be referred back to the Sussex CFS/ME service last year. The problem is they have downgraded their service. There was no one to one assessment available. I was sent to a 2 hour introductory course about GET and CBT. The physios who ran it were virtually begging the 15 or so people who were there not to go any further as they had such a long waiting list. They only offer 2 hour group sessions involving CBT and GET, and no one to one assessment is available apart from a phone call. The service is run by physios and a psychologist no doctor is employed. To be honest a 2 hour group session is beyond what I'm capable of and I could see little point in going further when no assessment would be made by a doctor, so I withdrew from the service.
I've just accepted that my stranger symptoms like my 'freezing' are a part of my ME/CFS mainly because it seems to be linked to over exertion, but also because I no longer have the fight to keep pushing my GP for a reassessment. The more I push, the more he tries to say I've got health anxiety! Like many people with our illness, I feel very let down by the medical community. A diagnosis of ME/CFS virtually guarantees any new symptoms will be ignored.
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georginaadams
- Posts: 6
- Joined: Fri Aug 16, 2013 1:10 pm
Re: Parkinson-like freezing - Getting stuck
I am certain that the NICE guidelines state that new symptoms should not be ignored. Perhaps your GP needs to read them.
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