Anyone else get this?

About Parkinson's and health Symptoms
1

I was wondering if anyone else gets symptoms like cataplexy?

http://en.wikipedia.org/wiki/Cataplexy

It's a bit like that weak at the knees feeling that most people get with laughter, shock or a good kiss! But it's amplified so you get a stronger physical reaction - more weakness and brief spells of paralysis - triggered by less strong emotions.

When it's mild it just makes you a bit weak -  eyelids, face, neck, hands and arms may sag and go limp. When it's bad you can fall like a puppet with it's strings cut and you can't move or speak or open your eyes. Lots of people who have cataplexy don't get the full on collapse/paralysis thing.

They used to say it was super rare except in narcolepsy, but there's about 15 other conditions it can occur in including some movement disorders. They recently found out/ accepted that people with Wilson's disease, (causes a kind of parkinsonism) can get cataplexy.

In narcolepsy only the people with very low hypocretin levels get cataplexy. Some people with PD also have low hypocretin and can have lots of the same symptoms as in narcolepsy. It was said that the one narcolepsy symptom no one with PD gets is cataplexy, and that this is because their hypocretin doesn't get as low as in people with narcolepsy and cataplexy.  Until this research saying they found lots of people with PD describing cataplexy symptoms.

http://www.sleep-journal.com/article/S1389-9457%2815%2900036-2/abstract

I'm curious about this - I can sort of understand them missing it in Wilson's disease for all these years because Wilson's is rare and so different in different people. But could they miss it in PD?

Maybe it's because it's like freezing of gait, it doesn't happen reliably in response to the triggers, - it doesn't perform for doctors, so doctors can miss it.

Is there just so much else going on in PD that this got missed? There's lots of PD symptoms that weren't seen as part of PD for a long time, but cataplexy, if it's bad, can be sort of dramatic looking - you'd think someone would have noticed. 

I'd be really interested to know if anyone else has this? I don't have proper PD, just something that looks a bit like it.

rhubarb

 

2
I get something very similar to this, Ive not got a diagnosis of PD or anything else yet really, I get episodes of paralysis with dystonia but I will also have moments where I will just suddenly be hit with weakness, it happened a few nights ago, i went out on a rare trip to see some friends and all of a sudden my face dropped and felt too heavy to move, I couldn't really talk, my limbs were very weak etc. I get this sometimes just in my legs too. I have been worse lately because they think I had a mini-stroke type of thing about a month ago so the recent problems might be due to that, I dont know. Whatever it is, I hate it!
3

Hello Suzynola,

I'm sorry you get this too - it does feel so horrible, like someone's pulled the plug out. Like with some of the parky problems it's that sudden powerlessness that winds me up.

It's interesting you got it when you're with friends. I get it badly  when I'm with people I'm close to, maybe becos that's when I have the strongest feelings. When my friends or my fella say something that makes me laugh I'm on the floor, but when the busdriver does, it's usually not so bad.

I've a crap memory so I always forget there's a mouse living in my compost bin. When I lift the lid, the wee mouse is sat there frozen in fear, looking at me, and I get a shock and land on the ground with veg peellings and teabags all over me. I never remember, and it happens everytime, like groundhog day.

I get it with doctor's appointments too - not so funny - though some of them have laughed openly!    I've tics/tourette's too, the very loud, very sweary kind. I can sometimes limit the tics till after an appointment, but I reckon the next time a doctor laughs at me having a cataplexy attack, after I recover I won't bother trying holding them in and they can just hear what my tics think of them!   

I really hope you have some answers from the neurologists soon. I'm still in diagnosis limbo too. 

I saw one last week. I was sat five feet from him, repeatedly punching myself in the head, and he wrote in his report that he didn't observe me having any tics. It's desperate isn't it?

all best,

rhubarb

 

4
Yeah I always think of it feeling like my batteries suddenly ran out! I end up doing everything in slow motion. It is interesting cos my brother has tourettes and we have always suspected there must be some kind of genetic link between his problems and my neurological problems, although my symptoms are nothing like his but the underlying issue must be similar. It is so frustrating when the neuro doesnt write a fair record of what has been said, ive sometimes felt they have made their decision before they even see me and then write a report that fits in with what they think. I have a terrible memory too but luckily doesnt sound as bad as yours, that mouse in the compost story did make me giggle a bit but it must be really bloody annoying for you!
5

Hello Suzy,  

I remember you saying your brother had Tourette's.  I've read about familial conditions that involve the basal ganglia and can show up that differently in the same family.

I don't know if you've had anything like this happen, but my experience is that when you put sensible questions about things like that to a neurologist, it can get recorded as evidence supporting a psychogenic cause.  Past a certain stage, can't fart without it being called psychogenic.

Yes, I think they've sometimes decided before they see us,  there's no way for them to take in any information that contradicts what they think they already know. They're evidenceproof. I reckon the job makes some of them sheep-like. They do know that there's a high rate of misdiagnosis in basal ganglia conditions, but it's too hard to engage with evidence that other doctors, people as clever as them, have screwed up.

I think most people who haven't been through misdiagnosis would be surprised if they saw the extent to which doctors feel free to edit and rewrite both what's said to them and the physical evidence. I don't think it's just doctors, i think it's maybe a general human thing - put any group of people in charge of reality for others and it seems to go a bit that way. I should stop ranting and go and get my tea.   

I've made some progress - I'm kind of diagnosed. I'm trying to get together a list of conditions that can cause tics and parkinsonism, and conditions that cause parkinsonism but can show up differently in different family members. It won't be a complete list, but if I get anywhere with it, I could post it here or send it in a message if that sounds any use, but pls do say if it's not useful.

I hope you meet a less sheepy doctor soon

all best,

rhubarb

 

 

 

 

6

p.s  -    thanks for what you said about memory problem, yes v annoying, but laughing helps

7

Hi Rhubarb,,

 

I couldn't agree more about consultation write-ups.

If I had a pound for every time I mark up my  copy letter following a visit to a specialist with the immortal words "I didn't say that, I said...."..

 

The worst were when  my symptoms of PD led to a diagnosis of PD half-way through a claim for whiplash.  My solicitor sent me to 3 or 4 specialists to get independent reports to contradict any suggestion that my whiplash symptoms were all down to the PD.  I wrote pages itemising the many and various errors of fact. and pure invention, left/right confusions etc.etc.  

 

The other worrying thing is that when the specialist asks the GP for a history of whatever you are presenting with, it is assumed that the whole story is there in the GP's records, This assumes that you see the doctor every time you have a problem - the chance would be a fine thing!!!   

 

I suppose medics must get training in taking a history  as everyone makes mistakes,    I would be interested to know how this is approached..  However the deliberate re=writing of history to suit the preconceived ideas of the medic is more worrying even if, as I agree, we do all do it.    

8

Hello Eileenpatricia

that sounds a bad time when you were diagnosed.  exhausting coming up against this stuff when you're  trying to get your head around everything that's happening. And all when you might've most needed some faith in how doctors work. How long did it all take to sort out?

yes i think it's a big problem when the GP won't record what they're told and the specialist sometimes ignores what you say unless the GP has told them it too. I've seen records where the referral letter and the report back from the specialist were exactly the same information.  it's a big waste of resources.

once a doctor has written something down, it's so hard to sort it.  Objective evidence that the record is wrong or fictional, doesn't mean they'll make amendments to ask doctors not to use the untrue info. A record can be proven untrue, and a breach of GMC regs, the Data protection act, the GP contract and the Equality Act, and is inevitably going to cause further harm, but still nobody will act to amend it. It would take a court case.

From seeing other people's records after serious medical errors - when doctors have nearly killed a patient and caused serious permanent disability -  it looks like there's an informal mutual butt covering system. The priority seems to be defending all medics against complaints and litigation, even where they know dishonesty will cause further physical harm.

I'd like to see a no blame system, like in Finland.  they don't try so hard to blame or protect individuals, and there's a bit more open communication about what's happened and what needs to change in the system to prevent future harm. It's not perfect but it'd help.  

I was trained in case history taking for another healthcare job. We were using the same model and text books that doctors are trained with. not meaning I had the exact same training, but it was interesting.

It made me get how hard a doctor's job is, how much you need to know,  even to know what questions to ask. I saw how easy it is to take a wrong turn in your questions, or lose focus or empathy for a moment, and cause harm. I think the job is intellectually and emotionally too big a job for anyone, and mistakes are inevitable. But if mistakes are inevitable, there has to be a way to communicate about them and resolve them.

I felt the training in case history taking was not good enough. It pressured us to ask the fewest possible questions and make the shortest notes, as if this showed you knew what you were doing.  It encouraged corner cutting and too much faith in what we felt/thought we already know,  because we're the experts. It's easy for experts to believe what they feel is the truth, and scary jobs can make people more vulnerable to overconfidence. But to be safe in that job you have to be able to cope with knowing you're always out of your depth to some extent.

We had all the same discriminatory thinking that everyone else has. When you add in the scared overconfident expert/mini god thing, it meant diagnosis could be based on discriminatory assumptions. It did my head in. 

I'd write five pages of notes where my colleagues would write one and a half. It works fine if you include a summary. If anything goes wrong, or if things don't go as hoped, you have this information and you've a better chance of working it out. I get it that doctor's don't have time to work that way, but that means there's a bigger need for a system that resolves mistakes openly.

It all gets a bit circular. That expert status and power gap between patient and doctor causes of a lot of medical mistakes.  The need to do the job quick adds to both mistakes and the expert status/power gap.  The expert status/power gap means there's no way resolve mistakes.

One day if there's time and energy to spare, (ha!)  it'd be good to do something on bringing together patients' experiences of all this stuff.

I'm doin lot of ranting and rambling here these days. I've spent too much of my life thinking about this stuff! I'm off out to the woods.

I hope it's a good day with you. 

 

rhubarb

 

 

9

sorry just seen I misread something you said,    -    yes, the GP doesn't hear about it all, so the specialist relying on the GP records is useless. with PD and parkinsonism there's too many things to say them all in a GP appointment, and they tend to focus on the bits of PD they know about.