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Pathologic myoclonus Evidence help
- Tommy
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6 months 3 weeks ago #290491 by Tommy
Pathologic myoclonus Evidence help was created by Tommy
Hello Guys,
I have Pathologic myoclonus
“ Pathologic myoclonus may involve persistent, shock-like contractions in a group of muscles and is more widespread in general. They contractions begin in one region of the body and spread to muscles in other areas. More severe cases can affect movement and severely limit a person's ability to eat, talk, or walk”
This affects me on average 4 probably now close to 5 days a week and lasts on average 6 hours. My body is constantly jerking back and forth when this happens and I lose the ability to speak completely. I’m still conscious and aware of my surrounds but can’t speak or write due to the jerking. I’ve been having all tests to find out what’s causing this since 2018 but can’t find out what it is.
I’ve applied for pip but didn’t provide enough or the right evidence the first time round and have now got to the tribunal stage. I was just wondering if anyone could help with and ideas on good evidence I could upload. The doctor is constantly giving me a sick note month after month saying I’m not fit for work and with “myoclonus awaiting neurology” on it. Do you think I actually have a cause for PIP as I know this is a rare condition? Like am I waiting my time? I’m in long term medication, it’s the same medication for epilepsy. Thank you
I have Pathologic myoclonus
“ Pathologic myoclonus may involve persistent, shock-like contractions in a group of muscles and is more widespread in general. They contractions begin in one region of the body and spread to muscles in other areas. More severe cases can affect movement and severely limit a person's ability to eat, talk, or walk”
This affects me on average 4 probably now close to 5 days a week and lasts on average 6 hours. My body is constantly jerking back and forth when this happens and I lose the ability to speak completely. I’m still conscious and aware of my surrounds but can’t speak or write due to the jerking. I’ve been having all tests to find out what’s causing this since 2018 but can’t find out what it is.
I’ve applied for pip but didn’t provide enough or the right evidence the first time round and have now got to the tribunal stage. I was just wondering if anyone could help with and ideas on good evidence I could upload. The doctor is constantly giving me a sick note month after month saying I’m not fit for work and with “myoclonus awaiting neurology” on it. Do you think I actually have a cause for PIP as I know this is a rare condition? Like am I waiting my time? I’m in long term medication, it’s the same medication for epilepsy. Thank you
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- BIS
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6 months 3 weeks ago #290508 by BIS
Nothing on this board constitutes legal advice - always consult a professional about specific problems
Replied by BIS on topic Pathologic myoclonus Evidence help
Hi Tommy
You are the second person to ask today about PIP for a rare condition. It is not just the condition per se that matters as far as the DWP is concerned, but how that condition impacts on your daily living and/or mobility as per the PIP criteria.
Because your condition is rare - I hope that you have provided them with some information about it from a reputable website. I would hope that if the doctor on the panel hasn't come across it - they will look it up - but I wouldn't assume it and the other two members of the panel might never have heard of it.
You say that you didn't give enough evidence. If you haven't already - I would provide them with a diary that describes your attacks and the aftermath. Obviously, you cannot do this until a long time later, but it could help if you could get something down. Even a couple of weeks of a diary would be useful.
If you don't live alone - and someone else has borne witness to these attacks - perhaps they could write a letter describing what they have seen and the impact it has on you.
Have you got a letter from your GP? It might be useful if you haven't and if they were willing to provide one.
Did you get a copy of your assessment report? Why did they turn you down? And what did they say at the MR stage. Obviously, you need to be able to counteract that. Have a look at the guide on how to challenge a medical report and see if there's anything you can add from that.
BIS
You are the second person to ask today about PIP for a rare condition. It is not just the condition per se that matters as far as the DWP is concerned, but how that condition impacts on your daily living and/or mobility as per the PIP criteria.
Because your condition is rare - I hope that you have provided them with some information about it from a reputable website. I would hope that if the doctor on the panel hasn't come across it - they will look it up - but I wouldn't assume it and the other two members of the panel might never have heard of it.
You say that you didn't give enough evidence. If you haven't already - I would provide them with a diary that describes your attacks and the aftermath. Obviously, you cannot do this until a long time later, but it could help if you could get something down. Even a couple of weeks of a diary would be useful.
If you don't live alone - and someone else has borne witness to these attacks - perhaps they could write a letter describing what they have seen and the impact it has on you.
Have you got a letter from your GP? It might be useful if you haven't and if they were willing to provide one.
Did you get a copy of your assessment report? Why did they turn you down? And what did they say at the MR stage. Obviously, you need to be able to counteract that. Have a look at the guide on how to challenge a medical report and see if there's anything you can add from that.
BIS
Nothing on this board constitutes legal advice - always consult a professional about specific problems
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