Thursday, 21 August 2014

Physiotherapy assessment 19 August 2014
Well first she asked how long pain in knees. I said well hard to say for I first thought old age, etc, but I suppose 1- 1 and half years ago but it got worse.
She said it said here in her notes 6 weeks.

I said I would try to explain for yes I haven't gone to Drs before with but went in January - dry said strain to muscles, rest, I did , but it didn't improve , told to go back as it wasn't improving by an occupational therapist, which I did and was told it was fat, and to lose weight -etc ,told history of how I took OT with me to next appointment as no physio appointment came which the previous Dr said she would arrange, plus how after falling took water tablets that worked in helping reduce swelling and pain and only weakness in muscles remain.
And how I had come to see I had mild cerebral palsy.

She told me to stop as she couldn't write down so fast. - So I waited but also had provided her with my outline of CP symptoms, (see below),
She didn't show interest in water retention.

Was switched when I said Occupational therapist came with me for I wasn't getting anywhere.

I explained I had X-rays so would show my knees and re eyes had seen specialist last week who said I was to come back to get further tests and prism reading glasses. And that left eye muscle too tight causing double vision.

She seemed switched off.

Throughout the assessment I had to hold on the back of the chair as it had no arms, I pointed this fact out to her saying I have to hold myself up as my back is not really doing and that I had always do this to accommodate my not being able to, but only now noticing I have CP that yes that is what I'm doing.

She asked how I had come to see as CP. I said I had not been looking for but had reasons I wanted to look it up to see what it was and the saw I had all the symptoms they described.

She asked did I have bowel or urinal problems, I said no not now but I did as a child suffer constipation, (and I was in hospital for. I put in brackets because I think I said this but not sure).

All the way through the assessment she referred to pain and I had to keep going back to point out that pain wouldn't occur unless I strained my muscles and if I pace myself I can prevent pain.

I said I didn’t feel my knees was to do with bones and water tablets took away pain, so just weak muscles above my knee.
She asked where I am weak. I said my back, knees and feet - and described how my feet give way.

Go numb, just feel like floppy underneath me when I tread so buckle.

She asked am I numb anywhere else and was I between my thighs, I said not thighs, but calf, but I think due to sciatic nerve damage for I refused to have surgery and lay in bed for 9 months, in pain all day. And that I sometimes feel the sciatic nerve, but that it isn’t pain, but more like sensation of and yes sometimes my calf is numb.

She asked how often I go down, like collapse and use my Zimmer frame. I said it varies; I do all I can to prevent but even so sometimes it just becomes weak (my back) for no reason, no matter how I try to accommodate my weakness with Zimmer etc.

She asked how do I cope when down, I said I can't use Zimmer for I can't stand, no strength in my body, like from my feet to my body I am like I’m paralysed; so I use my arms, I hang on doors to get to toilet and call friends and they come straight away.

She asked did I work, I told her yes I was an author

She wrote her notes and asked me to stand to see my knees, I was in shorts.

She asked me to stand on one leg I did but on left leg ok, maybe. On my right no. I couldn't lift my foot off the floor for more than a second, and my body started jerking.
She asked why, I said I didn’t know.

She asked I bend my knees and come up. I said I felt a strain over my knees.

She said now do but stick my backside out, I said it was easier but still felt it on rising.

She said yes, (like to be expected) it's normal.

She went to see x-rays.

Came back said she looked and slight arthritis in left knee but normal for my age.

So I said yes I didn't think it was bad, because no pain only in muscles and that is due to weakness.

I was sweating during the assessment and pointed this out to her and that the eye specialist had said he would get me referred to an endocrinologist.

She got me to lie down and asked I lift my legs. For my right leg lift I noticed I was holding onto side of bench, but thought does she want me to hold or not, so I let go.
I could have asked but I didn’t.

So for the other leg I refrained from doing so.
I could hardly lift my leg= she asked why. I didn't know -and said that.
My legs were shaking as I tried, she asked why. I said I didn’t know, but yes I shake and jolt, often.

Then she asked I bend each knee, I think I was ok

Then asked I bend both together but no I couldn’t, and legs started shaking

Seated on the side of bench
Asked I pushed my left leg against her hand, she needed hardly any resistance.
Then she asked I bend it backwards against her hand again hardly any resistance

Then right leg worse on both measures

She gave me exercises to do and asked I come back in 3 weeks.

 Below is what I handed to the Physiotherapist

my symptoms add up to Cerebral palsy

Birth and early childhood
·         I was a month premature
·         My mum went into early labour chopping wood
·         I was 4lb.11 oz.
·         I was behind on development miles stones

When I was a child I fell over so easy and was told 'don’t run you know you'll only fall over' by my mum and yes if I try to go fast I fell over so was useless at sport, except for swimming and then yes I only really swim with my arms.

      Hand eye coordination

I was a tom boy climbing and playing football but yes put in goal as I wasn’t any good at the rest and when I caught the ball, which no I was rubbish at really, it often resulted in my fingers breaking.
My sister tried her hardest to teach me net ball, but no I would miss coordinate the catch, I couldn’t play tennis either or any other ball games.

Small motor tasks

Small motor task 'cack handed' always held objects at odd angles.

Hand flexors’

sometimes cramp when writing and wrists very floppy sometimes.
  •  my hands are often clenched tight or one hand tight the other loose

 Sometimes my hands cramp up when I write.
As a child I had weak wrists so couldn’t do hand stands.
      Poor balance, so no hand stands or head stands.
     Once my sister spotted for me doing a head stand but I crashed down after and
     smashed my foot and went to hospital re breaks and they saw a piece of bone in side   
    of  my foot and said may have broken off or may be genetic, if genetic will be in both   
    feet and yes it was in both.
    I was told I was clumsy


      When I caught the ball I would often have my fingers break as a result of, especially my
      little fingers.
     I would fall if I ran and then yes break my fingers saving me.

     Once I played bull dog and the object of the game is to get someone down, before they           
     reach the other side, they swung me and I broke my left wrist in 2 places.

     Feet flexors’ –

     also I would be forever twisting my ankle as a child, it’s like it would give way and buckle      
     under and tear so was bandaged for support and due to swelling.

·         now days it still buckles but les tearing because I walk slow too slow for most people

·         but it goes into spasms and locks on point and so I can’t walk on until it releases or it would tear, because locked muscles.
·          Drs tell me they can’t diagnose without seeing it happen but I can’t get to them when it happens because can’t stand on. one Dr told me call for an ambulance but that felt stupid but also I learnt if I just stay still for time, about 20 -40 mins it releases and I’m fine
·         sometimes I miss gauge a step, like my physical spatial awareness is not connected to my foots whereabouts

 Hip sublexation

sometimes I lean forwards from the hips and can’t stand up straight but feel drawn towards the floor like a pull.
If  I’m out when this occurs it’s hard to get home, for it draws me to the ground and becomes weaker as I walk so I stop and lean over a wall to rest.

I was as a child and before surgery ‘double jointed’ and can dislocate my shoulders and since learnt my hip dislocates.

 x-rays in 1998 show extreme wearing away of my right hip joint and also arthritis in my spine like above my surgery point of L5/S1.

When I want to hospital in severe pain, I collapsed without any strength, ever surgeon was more intrigued with the fact I had arthritis in my spine aged 37. They said it was unexplainable.
X-ray didn’t show my disc pushing into my spinal cord because it isn’t made of bone.
 So the hospital gave me injection into my spine which had no effect.  I waited days in agony on a hospital bed until they took me on a stretcher to another hospital, Whipps X for a MRI scan, this showed clearly my disc was pushing into my spinal cord and that I needed surgery.
I refused as I wanted to try other means so was put in plaster and sent home.
It was shear agony to lay on my back I spent 9 months laying on my front.

Eventually I had a discectomy in November 1998, it was successful but the torso weakness still occurs randomly and renders me unable to lift myself up, like all the muscles collapse in my lower back.

Now I am on and off Zimmer frame throughout the day, like when it gets weak, especially when I have been sitting. Not every day as my symptoms vary daily.

If I can’t stand up straight due to my hips feeling they won’t straighten I now use my Zimmer, to support me rather than strain my back.

and also sometimes when can’t hold my torso up at all because it’s like it’s collapsed there.

 Knees weak and stiff

I have been twice to my Dr  to ask for help with my knees being swollen and stiff .

First time the Dr said rest
Second time another Dr said it was fat and to lose weight. I asked that it could be water retention ut she dismissed this saying no as she could see when she poked my knee it didn’t move and water would. She said she would refer me to Physio but no appointment came.

I fell and smashed my knee on the beach rock as my knees were not flexible, someone bought me water tablets and they have helped to reduce the swelling and less stiff now and bend better but still muscles are weak to climb steps or walk on incline.
I realised that it could be due to physio instructions I received last year for my back where she taught me how to 'switch ' my back muscle on because she said I switch them off to avoid pain and so one aspect was to instead of hold on say furniture to lift myself up I need to switch on my stomach muscles, like by becoming aware of them and contracting them and then standing up not using anything so I did and I stayed ok so discharged but since then it’s like I see now this has caused strain on my knees to lift me and they are not strong and Dr did say before last one I needed to rest my legs so muscles could repair and so I did but they never fully repaired and I was putting on weight due to thyroid also being extremely abnormal and well I therefore am limiting my activity and the next Dr told me its fat.

Recently I revisited the Dr and asked about the water retention but she said she didn’t know of the water tablets I was taking and that she wants to deal with things one at a time, so I stopped taking the tablets to see if my legs would swell again and quickly they did, plus became stiff and hurt even when resting, so I have started taking the herbal water tablets again and the swelling has reduced and the stiffness reduced and pain also, but they are still weak to get up and also to climb steps or walk on incline. I have to walk down stairs sideways most of the time.

I have stopped doing as the physiotherapist advised and using frame to get up if I feel weak because my knees are so weak in muscles.
Weeks ago my knees were very stiff and swollen I tried to swim but my body struggled and my heart started to hurt so I stopped and rested then went in sauna no change then went in Jacuzzi with bubbles and after my legs bent somewhat better

My leg comes out of its socket and in x-ray (done aged 38 it shows worn away right hip I have been shown how to put it back in its socket but well if I’m tired/drained it don’t stay in.

Muscle tension and control

 Sometimes I walk mechanically like a puppet/machine.
Some muscles get tight some get loose and it don’t always happen in the same muscles it changes

  •  Primarily affected from the waist down
 Left side is weaker than right

Always I lay on left side as on other it is never comfy

twist in my spine makes left rib cage stick out
Wearing even slightly raised shoes throws my whole linage out and weakens my lower back so only can wear flat

standing to say wash up drains the energy out of my lower back and I feel like a gravity pull towards the ground, like I can’t resist and so I’m limited how long can stand and it’s not constant but other variables involved like how tired I am and also yes now becoming aware I do have CP, I am able to perceive how to address things, like I tried before always to resist using Zimmer thinking no don’t get dependant on it but now I see no use it if feeling pull because then less strain created, so now I use

I walk slow and when I try to walk fast it is like my coordination becomes hard and my muscles start to lock, also as I tire my walking becomes slower.

I lean when I’m sitting or standing, and use arms of chair to prop me up.
Can’t stand for long, need to move or strains my back
Sitting too long and my body stiffens up, in knees and lower back/hips.
Sitting weakens my back so sometimes I don’t sit all day.
Also may need Zimmer frame to get up and stand after long periods of sitting or weak.

Sometimes it’s like the outer skeletal muscles are holding me together whilst the deeper ones have no strength or the energy I feel soaring through me like electrical charge creates like tension.
If I try to walk fast I am prone to fall over and running is not possible like my legs won’t do the movements.

when I collapse due to my lower body giving way my body wants to contort into a position where my right leg dislocates at hip and also right arm wants to be above my head.

 Visual impairment

 I have sight problems, double vision before diagnosed as thyroid eye disease but I 'cured' it and so was discharged from hospital checks but recently expressed need for to be re-referred as double vision is back.
I had optician test me and they said I have cataracts forming on both eyes but yes they before at hospital said if symptoms occur again to come straight back my appointment has come quick time for to see eye specialist
 my vision can vary.

Recent examination the Dr who specialises in eyes said the muscle in my left eye is too tight, thus causing double vision, he is arranging for further tests so that prism glasses can be made.
He also is writing to my GP the request I am seen by an endocrinologist.



             Although never diagnosed I’m dyslexic.

Tremors and involuntary movements

my body becomes electric, vibrates and energy builds I can blow electrics, so I also hold myself together in a sense, like hold body tight , like a outer shell and that’s how I manage to hold myself up but in time the muscles tire.
It also jerks and jolts, involuntary and also sometimes my foot or wrist will shake very rapidly.
If I’m tired it is worse.
  •  if I relax that’s when I shake or jolt, like the more I relax the more I do if I focus my mind on something it don’t happen much.

     Sometimes it does when I sit with friends, they see I jolt involuntary but get used to me also if tired will happen in public like when speaking say to a Dr

Blood test results

Normal thyroid score should be between 0.3 - 5 TSH and mine was about 64.56 last year. and T4 should be 8.8 - 18.8 and mine was 5.2
And inflammation tested last year was 1000 and should be about 5 the Dr told me yet they never tested again and yes this is abnormal
Then another Dr said no my thyroid scores were common.

Recent blood test results on inflammation were 14

I sweat loads and my head gets very hot

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