Physio doesn't seem to be doing much good.

[paul318]

I am now three weeks into my physiotherapy program. It doesn't seem to be helping me too much. My legs are stiffer after the exercises than they are before, and I am finding the exercises more difficult rather than easier, which is what you would usually expect when doing exercises. I have been seen mainly by a physiotherpist assistant twice a week, and doing the exercises on my own on days he doesn't come in. He has ask the physio to reassess me as it seems to be doing little good. In fact walking is more difficult for the rest of the day after having done the exercises.

How do others who have a diagnosis of PLS and have physiotherapy find it, does it help or do you find it more difficult to do things after the exercises?

I had a phone call while writing this, to offer me an appointment with another neurologist next Monday. Hopefully my physio might be able add something to the discussion! I must try not to get my hopes up as I have done in the past. I might still be non the wiser about what I have once I have seen him. Hopefully he will ignore all the 'conversion disorder' crap in my notes and look at me objectively.

Paul

 

[Just J]

Hello Paul. My husband went to PT for about 12 weeks last year and his complaints were the same as yours. He was so drained after PT that he could barely do anything else the remainder of the day. He gave it a shot for a full 12 weeks (3 x week) and unfortunately there was no improvement.

 

[olly]

hi paul

sorry the physio is not helping.
i had a physiotherapist come to my home for about 2yrs on and off but in the end we both decided to call it a day.
i too would be stiffer and in more pain after plus very fatigued,the pt also said i had exercise intolerance(before i got ill i ran 5 miles a day and went to the gym 3 times a week lifting weights)
now i get enough exercise just trying to walk and do basic things.
i find stretching is the best thing.

i am so so pleased you have another neuro appointment.
as soon as you go into the room tell them respectfully but firmly that you NEED HELP and if they are not going to take time to listen to you then you may as well not be there.
ask them to check your reflexes.
ask about mitochondrial desease and pls,if one of these is a possibility.
ask about genetic testing.
ask about baclofen or other meds for the myoclonus and stiffness.

sorry for going on but as we all know you have to be firm and speak out with these people.
i really really hope and want you to get somewhere with this appointment.
i will have everything crossed and praying like mad on monday for you

 

[Geo]

If the muscles are not being stimulated by the Brain ,and if there spastic this is whats going to happen . I truely would suggest Just doing stretches at home ,this way you'll know when you feel like stopping for a minute ,these people dont have a clue how you feel and when enough is enough . Get a strap or rope to do leg stretches get 2 chairs put your legs up on one put the rope over your foot or toes and just pull the toes back to where you stretch the Calf muscles hold that so they feel stretched and so on . Physical Therapy is for a Patient recovering from Stroke ,PLS Is Not A Stroke ,Totally Different ,in a stroke theres no Brain Damage or Little And parts of the Brain will Learn to take up where one part doesnt . The Brain is Made so if one part fails another will take over somewhat ,not Totally . Do Stretches at Home Save money and a waste of time .After all, Cant you do what they do ? Your Friend Geo

 

[paul318]

i am so so pleased you have another neuro appointment.
as soon as you go into the room tell them respectfully but firmly that you NEED HELP and if they are not going to take time to listen to you then you may as well not be there.
ask them to check your reflexes.
ask about mitochondrial desease and pls,if one of these is a possibility.
ask about genetic testing.
ask about baclofen or other meds for the myoclonus and stiffness.

sorry for going on but as we all know you have to be firm and speak out with these people.
i really really hope and want you to get somewhere with this appointment.
i will have everything crossed and praying like mad on monday for you

Hi Caroline,

I will push a bit more than I've done before when seeing the neurologist. Being assertive doesn't come particularly easy to me, I tend to be quite laid back.

The problem I tend to face now is that I no longer have much trust when it comes to doctors. I also feel the need to prove there is something wrong with me, which I know affects the way I behave. I am a little bit unsure about mentioning PLS to the neurologist because past experience has shown this not to be a good strategy. I mentioned to one neuro I thought my movements may be myoclonus, he made a big issue out of it as he thought it was a term I should not have heard of. He then seemed to assume I had been on the internet, looked up lots of symptoms and copied them. The only reason I knew about myoclonus is I Googled 'sudden shock like involuntary movements'. So I now try to avoid looking as if I have made a self diagnosis.

The success of my appointment will depend much on whether the neurologist takes me seriously and looks at me objectively. If he sees conversion disorder in my notes, and is lazy, I don't stand a chance.

I will try to get some advice from the physiotherapist on Thursday, as I think she may have contacted my GP and asked him to refer me again as she could see things are not right. As you know in the UK you usually get a letter for appointments to see a neurologist 3 months before the appointment. It is very unusual to get a phone call and be asked to attend the next week. This could be a hopeful sign but I am trying not to build up my hopes.

It always seems strange; I actually want a diagnosis. Not because I want to be ill, but because being ill and not knowing what is wrong is worse than the illness. If you have a diagnosis you can deal with the problems much easier. At the moment I am in the dark and have no idea of the prognosis.

Best Wishes,

Paul

 

[olly]

paul i totally understand everything in your post as do many many others.
it is a bit strange you were offered this appointment so quick,i wonder if someones had a word in someone ear..........intresting as i know you get your appointment letter about 6wks before.

it would be good if your physio could write a report to take,voicing her concerns.
physios spend more time with the patient and so can spot anything thats not right.
could you call them today and ask if they could do that in time for monday?

i can tell from your video you have myoclonus there is no doubt about it,this is a pathological sign/symptom and would not be present in m.e .
it is so hard i know as i was un-diagnosed'ed for some years.

i know some with pls that did not get a diagnosed for over 10yrs.so many neurological symptoms come under a umbrella and its so hard to pin point a specific cause.
finding a neuro you can trust and will listen is a major hurdle when you have unspecified symptoms.
in situations like this i think it helps to think that they are being paid to give you a service,a good service. you would not put up with incompitant work from others so why should people like this be any different,they are only human like us.
failing that just do the "picturing him with no clothes on ":lol:

 

[paul318]

Thank you Caroline.

I have a question about myoclonus. I was reading one description for diagnosing PLS and it said there should be no involuntary movements. In fact it said involuntary movements would rule out a PLS diagnosis. I have looked at a few symptoms lists for PLS and although clonus is mentioned, myoclonus isn't. So I am a little confused as you do have PLS and also myoclonus. Do you know if myoclonus is a common symptom for people with PLS, or is it unusual to have it?

I am sure that my rather violent myoclonus is one reason I have had problems getting a diagnosis. I think the neuros concentrate on that rather than other signs as it is quite dramatic especially when I am under stress! I have a strong startle reflex too. Sometimes I think it is my startle reflex rather than the myoclonus because it often seems to be triggered when a muscle twitches in another unrelated part of my body. A abnormal startle reflex can be a symptom of stress as well as neurological damage. I think the National interpreted it as stress related. The thing is I get it when I am not under stress too.

Paul

 

[Geo]

Paul ,all Myo Means is many ,then you add Clonus ,is movement ,many movement, Myoclonus same thing .Geo

 

[olly]

paul,i know of someone called kelly in newyork that has severe myoclonus ,almost to the point of seizures and she has pls.
what you read on sites is just basic stuff,like for instance bladder symptoms.
they stated this was in just hsp but now they know it effecets those with pls and the spf site has updated to include bladder issues in pls now.
i have progressive bladder spasms and weakness.
most neuro's dont know enough about pls i think this is because it effects the grey matter,theres no way of imaging that area yet to understand the effects of the desease.
its only on autopsy they can finally see the damage caused.
there is a lady in the usa who has had pls about 20yrs and she goes round educating neuro's about pls,ofton with this the patient is the expert.
got to go but will get back to you later:smile:

 

[paul318]

Thank you Geo and Caroline. That helps.

Paul