My letter I wrote for my GP's to place in my file, as it appears not much is being written there

Patient : Louise Clarke                                                                                

To who it may concern,

I am writing this letter in order to address the concern I have after my telephone conversation I had with Dr********** last Monday 17/11/14.

I have suffered with physical complaints for many years, mostly pertaining to my back, but in the last year I also have had great difficulties regarding my knees.

Last week I was in need of a repeat sick cert, in order to receive the appropriate benefits, therefore I called the surgery and asked a Dr called to arrange one. Dr *********** called me and told me she was not happy to write one for me. Not wishing to debate the matter I said ok. but then she went on to state that she had read through my notes and that there was nothing to suggest I was unfit for work.
I therefore went on to explain to her that I had previously been having Dr ^^^^^^^^^^  write my sick certs, and she had continued to write that my problem was with my knees, although I had not been mentioning my knees but explaining how my back was too weak for me to sit to write and that I was an Author so needed to sit to write.
I also asked did it not say in my notes that I had collapsed a few weeks back and waiting over a day for a GP to call, who then told me to got to A&E.
I added it was not the issue with my knees that prevented me from working, and yes the swelling had gone down but the muscles have remained weak.

She then remarked that i did not have a diagnosis. To which I informed her I was currently waiting to attend an appointment with Neuro, and that this was as a result of me seeing a physiotherapist at the MCAT team, and asked was that referral report not in my file either.

I said I was not a doctor but do know that my symptoms are fitting what is found with Cerebral Palsy and that it may not be CP I have but I hope the Neuro specialist will be able to diagnose the cause of my problems, as the physiotherapist in his report notes that he does not think it is caused by bones.

Dr ********  asked when was my Neuro Appt for, to which I informed her 18/12/14. She said that she would give me a sick cert until then and wrote one to end on the 17/12/14.

My concerns are that it seems my files are absent of the issues I have been stating to the GP's each time I make contact and thus this misunderstanding has occurred, plus my files will not contain a clear picture of my health, thus I feel a need to outline my current health difficulties and the resulting problems.

My disabilities

My first issue is with my spine, I have suffered from weakness in my spine since 1997 but also on occasion before had difficulties, dating back to childhood.

In 1998 I had a discectomy L5/S1 which prior to having I was unable to walk for 9 months, in which time I suffered from extreme sciatic pain where the disc was pushing into the nerve. I was offered surgery but refused and hoped to cure myself without needing the operation, I received a lumber injection that had no effect. So I was wrapped in plaster caste , my whole torso and sent home with crutches, I was unable to sit throughout that time so was transported around on a stretcher, receiveing various forms of physio and also I used Chinese medicine and other alternative treatments. Throughout the time I was on maximum doses of pain killers. i eventually accepted I needed surgery and agreed to have. 

The surgery was successful, thus I returned to work, offering training and counselling but my back remained weak, the muscles on random occasions would just give way, and my torso became like jelly, with no strength to hold me up. The occurrance of this increased over time, but also I have become more aware of when my muscles are weakening so now manage to avoid total collapse occurring so often; although sometimes like with the recent collapse I had no prior warning; I stood up to go out and collapsed back down again.
At those times I can not lift my body even onto to zimma frame and once I do manage to get onto, can't move it as it requires I hold myself up as i lift the frame up off the floor which I lack the strength/stability to do; it's like my body becomes paralysed from above my waist, So maneuvering is extremely difficult. Also when this total collapse occurs my ability to pass urine also stops. This has resulted in the past in my stomach swelling up very large and then projectile vomiting occurring. Always when I collapse i start to feel a tightening around my waist to. I find the best I can do is try to relax and gradually the problem goes,this takes about a week on average for me to be able to stand without a zimma frame, but also this can be for limited time.

My current problem is with my spine, the lumber area is weak and as the day progresses it becomes increasingly weaker, the muscles front and back seem to struggle to hold me up, like the strength depleats from them; so I am unable to sit for long.
With walking the distance i can walk varies, from not far at all like only around my home, and maybe in need of zimma frame, for support, to walking quite a distance, but after walking for X amount of time my knees become stiff the muscles become weaker around my knees and start to lock up, and also the lumber area struggles like without strength and my lower spine becomes sore,and my hips become more and more flexed, resulting sometimes in me having great difficulty getting home, needing to rest by leaning over walls as I struggle to stand up.
Climbing steps or walking on an incline is extremely hard, and also I walk very slow, and if I try to walk faster its like the mechanism involve does not function properly and the rhythems in waking go wrong and my legs buckle, and just wont do as required, it feels like I'm walking like a robot. and I need to concentrate my mind to move my limbs. 

Also sometime my spacial awareness is out and so  I trip/miss step or knock things with my feet in shops say.

My difficulties seem to be with my muscle tension either too tight like in my hips, knees and eye; causing double vision. or too loose so no/little lumber strength or in my ankle my foot buckles sometimes under me.
Once home from walking my back weakened it can be very hard to sit in a chair even with pillows for support I slide down the chair. Plus after walking my calf muscles tighten up along with my thighs, and hips and so sitting becomes uncomfortable. I also have pain in my ankles of stiffness after walking.

Resting causes muscle stiffness so I try to move around regularly, but tiredness weakens my muscles further so it is  a constantly varied situation for me. It is like i only have so much I can do in a day, which also varies, but if I rest well I can achieve more. Also it is noticeable that my muscle recovery time is far too long, in that normal rest time is not sufficient to ever fully recover. Also when I get tired my body starts to vibrate and shake, and jolts involuntary. It is like my body is suffering from exhaustion even though I am not doing things that would over exert an average person of my age.

I also will add here that I am currently under an eye specialist for my double vision, where the muscles in my left eye become too tight, diagnosed as thyroid eye disease. He did request that i have blood tests and be referred to an endocrinologist to determine the cause of my sweating I have and also the nervous twitches and jerks, and anything other to understand my eye condition, but the practice decided against referring me to the Endocrinologist. I am soon to visit the eye specialist again with the results, (8/11/14).

The above outline I hope helps you to understand why I ask for sick certs, as my condition results in normal activities taking far to long to achieve, hence just getting ready for the day can take hours as it requires i rest often sometimes, and coupled with this doing basic home chores like washing up, which strains my back as standing still is far more difficult than moving, in fact moving helps me lots but tires me too. All a balancing act that is unpredictable so planning ahead is somewhat hit or miss.

I feel i have covered my complaints pretty much here in this letter, and it is my hope that with this being placed in my file a better understanding can be reached by anyone concerned with my case.

I thank you for you time in reading this and hope future communication is improved by it.

Yours Sincerely

Louise Clarke (DOB )

The Dr called, (a different  one than normally calls, the one who said the swelling in my knees was fat)

She started by saying..she is not happy to sign me off............I said Ok, ( a bit perplexed)

she then added, she has been reading through my notes and there is nothing to suggest I am unfit for work.
I responded with the facts...saying

'The other Dr keeps writing about my knees on my Med Cert, but I don't say anything about my knees. The swelling has gone down and they are not strong. but I can work with bad knees it's my back; I can't sit up for long, I write, I am an author but because my back is weak I can't.

'I colapsed a few weeks back and waited over a day for a Dr to call, who then said go to A&E.
don't know if it says it in my file.

She said there's no diagnosis.

I told her 'I found the symptoms fit with CP- maynot be, maybe something else, I'm not a doctor. My symptoms fit with cerebral palsy, and I want to know what is case and why. I am awaiting my appointment with Neuro'


She asked when was the appointment for


I told her the 18 Dec, I added that in my file there should be a report done by the physiotherapist from the MCAT team, he asked for the appointment to be made to Nuero and said it was not my bones. So he asked you to refer me to Neuro.
(She sounded like she found it.)

She said 'ok, but laying down all day is not good for your back, and did they give you back exercises.

I said yes and do them when I can. But first I had physio for where my knees were swollen, and now they have gone down, but still they are not strong. And my back is weak in lumba area and sore in lower area. And that also my calf muscles at the back hurt after walking and my ankles hurt too.

So I don't sit for long and I need to in order to write.
(forgot to add I have double vision when reading/writing)


She said ok she would sign for one month, until my neuro appointment.

Fri 17 Oct
the next morning after posting this I received a call from one of the GP's at the surgery; the one who had called me when I was unable to walk).
He said that he had received the letter sent by the guy from the MCAT team, asking they refered me to Neuro, and so he asked was there any hospital I would prefer. i said no that I may as well stay with the one I have been using as they know me and have my files.
I also found a voicemail on my phone on Friday, from social services, whom I called. This GP had called them and asked they sent an Occupational Therapist to assess my home environment. They told me it may take a few weeks.
The GP asked had they called, and I told him yes and thanked him.

Soon after the post come and in an unsealed envelope the letter asking for my referral to be made.

So I await the appointment.

Yesterday Thursday 16 Oct I called the surgery to have a GP write out another sick cert for me to receive benefits. They said I had to talk to the GP who is dealing with my case. I awaited her call. I explained how I had collapsed about 2 weeks ago and now was walking but not strong in my back.
I collected my sick cert and once again she had written I had Artheritis of my knees. (which I don't have but I will not argue just send to the benifit people as required.

Regarding the Bioelectromagnitics, I have deduced from my understanding of that I need to make sure my body is helped to vibrate at the correct frequency and so each day walk on the earth, and this has reduced and stopped the vibrating, so i believe I have found the solution.

Discharged from Physio awaiting referal to Neuro/studying Bioelectromagnetics

Friday 10 October

I have improved in strength since last week, and back doing the knee exercises given to me.

I have another avenue I have been looking into, that of vibrating, for I feel vibrations in my body most days and have decided to deduce what is causing them. I know tiredness seems to be a variable that increases the strength of the vibrations felt in my body.

I made a thread regarding it on Facebook
https://www.facebook.com/louise.clarke.7505/posts/10204144096816257

Here I write
Thinking,,,,,,,,,,,,,,,,my body vibrates, has done for a few years now. Told drs ,,,they dont know,,,,,,,,,,,,,,,,,,,,,got 4 roads to look down
1, Physio-psychological (general) a made up term by me,,,like general sense, of word, mass programming.
2, ELF..electronic frequency
3, Demonic ; which work on frequency waves.
4, Repressed body memory
5, Programed body instructions

I first searched re Physical medical realm on net and found many sites with threads where people describe similar sensations, where they have had tests for everything it seems and still obtained no answers. Although I did notice a common theme of spinal problems, and the sensations related to the spinal area involved. Some of which were L5/S1 which is where i had surgery, and also the area where I felt my muscle switch off and resulting in my collapsing on the 25th.

I then looked at ELF, and noted yes I live right next to a tower and yes when I returned recently from the coast I was feeling OK, but as soon as I returned home I became tired and vibrated strongly, so I went back to the coast this Monday gone to see if the vibrations stopped. They didn't although they were not so strong.
But I also note I am less stressed at the coast, but have more comforts there like a bath and a good bed, and the sea.

I returned back to London to attend my physio appointment for my knees Wednesday.
She said she had spoken to her college who assessed me for the MCAT team and he had told her he has written to my GP to refer me to Neuro for a diagnosis.
I informed her of how I had collapsed since last seeing her but was back doing her exercises now.She said I no longer needed appointments with her as I just needed to continue doing the knee exercises she had given me.
She also gave me a sheet with exercises for my back on.
I told her how I spend a lot of time lying down as my back is too weak to sit up for long, she told me to try to avoid laying down as that makes the work I do to strengthen my knees become ineffective.

So since Wednesday I have been pushing myself to sit and move about rather than lay down. What I found is that this tired me somewhat and results in stronger body vibrations occuring, so confirms somewhat that tiredness is involved.

But also I have a friend who is very knowledgeable who suggested the vibration may be coming from me and that a way to know would be to try and increase/decrease.

This I tried to do and found yes if I focused on, like tensed up, like holding my breath sort of, I could stop the vibrations temporarily.
I therefore went on to learn more about frequencies and Bioelectromagnetics

Bioelectric and Bioelectromagnetic Fundamental Principles of Living Cells

Fundamental Principles of Bioelectric and Bioelectromagnetic Disorders of Living Cells

So now I am looking into how I can better stablize my body frequencies.

I have found dancing improves my strength in muscles, and am now looking at the effects of activity and also music.
I will update on my findings next week.

My back collapsed on 25 september but I'm up again

3 October
Well it seems I have weekly updates to give, so I better get this one done before next week arrives.
Following on from last weeks report here on the 23 September which was Tuesday, I stood up to go shopping on Thursday and a muscle in the lower part of my spine went loose and i was not longer able to stand up, my back had collapsed.
I am familiar with this happening and know just lay still and don't fret or all the muscles will lock and cause pain.

I posted on Facebook what had happened and a friend said she would come over and another would come to collect me the following day and take me back to the sea, where I have bed and support.
When my back collapses I am not able to walk , stand or sit,,I use a zima frame to move but it is extremely hard for when I lift it off the ground I am not able to support my body, all my strength is in my upper body and arms so very tiring.

I called my GP surgery to report it and see what they could do, they said call back in the morning.
Through the night I come to realise it would not be a good idea for me to go to the sea and I would need to get up stairs once I arrived; which would involve me lifting my whole body. I realised I may not be able to do this once there and therefore was concerned with what would that mean. I recognised I would need to be taken to hospital there but unable to sit would need streacher. I decided instead to call GP surgery in the morning and ask them to help me.
I called at 8am, the receptionist said he would get a GP to call me,they would be calling around 11.30 am.
The time came and went, I waited until about 2.30pm and then asked my friend at sea to call them and ask what was happening, as I had run out of phone credit.
She did so and was told I was on the list for the Dr to call.
around 5pm still no call and I also was aware I was not passing urine, which I had been told by my other friend; an Occupational therapist this was not good as toxins would build in body. I told her how in the past yes my body had swollen up and felt like a tight band around my waist, (which you can see I have draw also in the art at the side of this blog.)

When the tightness got so bad and i felt like I would explode and well in a sense I did as I stood I projected sick everywhere.
So she said no I needed to go to hospital.

My friend called GPs again and they said the Dr will call, but will then say get an ambulance.
So I called an ambulance, and because I said No I don't have pain, only cant walk, stand or sit, so can't get to hospital, I was told No I couldnt have an ambulance as based on what i say cant send emergency ambulance so call doctor again, but she recognised i had, or call 111.

I could call 111 and they could assess me and may get me an ambulance.
So I waited for the GP to call instead as I knew if he refered me I would be seen quicker at hospital. He called 7.39 pm.

I told him of my predicament, he said call Social services, although they were now closed until Monday, as I needed food.
I asked him about him refering he said no I needed to call them. I said about how my friend says I need an environmental assessment for my manouring in my home, he said that is an Occupational therapists job, he could refer me to one but not to Social services. He said he would make a referal for me to Occupational therapy.

I asked what could he do re my back, he said only give pain killer and support. I said no I wasn't in pain but not passing urine. He told me to call an ambulance. I told him that i had tried and was refused and told to call 111, and i asked could he call one, he said NO.

I decided not to go to hospital as it was evening and would be stressful and I would need to get assessed on phone, then if they argeed to give me an ambulance, I may wait forever at hospital, being low priority, and would do better to try and relax my body and pass urine by massaging my bladder.
The next day Saturday I was somewhat stronger, in that I could manouver around my home on the zima frame without the feeling coming from my muscles like one wrong move and they would tear.
I proceeded to improve and had a friend come and get freash veg for me which I made a soup with, plus I managed to drive to Chinese herb shop on Monday to buy Gou Qui Berries to strenghten me.
Today I am not in need of any walking aid.

Next week I return to the Physiotherapist I see for my knees, which yes I am able again to do the exercises she gave me.

today 23 September
Last week I wrote on the 16, re needing being referred to Nuro.
I was very weak in muscles that support my spine and also they were very stiff,,,so I went to Coast to stay at friends where I have a proper bed and a very comfortable chair to sit in as opposed to a deck chair and sofa bed in London,also I had use of a bath there whereas in London i have a shower.
I realized I wasn't able to continue working ( Author) as it takes me a couple of hours even to get ready in the morning and also the stress is not helping me to focus on writing books or proposals,
I called my GP on Thursday 18 September, explaining this to her> She said No problem ,she would write a sick cert for 4 weeks and then review.
Yesterday I returned to London feeling much better able to stand and walk,,,I went to the GP Surgery and collected my Cert, but on it she has written,,,,Knee osteoarthritis NOS.

This is not the case, she even pointed out to me the previous Monday that my XRAYS shows no arthritus, only slight. Plus I hadn't mentioned my knees in the telephone conversation, but that my back was too weak and stiff to hold me up long and I was stressed.

I also said to her whilst on the phone that when I had attended the MCAT appointment she had arranged for earlier that week the physiotherapist had said I needed to be diagnosed in NEURO first, and would be writing to her for. She said she would wait until the letter came.

I have been keeping an account on this matter and related issues for a long time on facebook.  I in  recent months created a 'NOTE' on Facebook to post the links in , here is the  URL

cerebral palsy

https://www.facebook.com/notes/louise-clarke/cerebral-palsy/747238375333021

following on from where I wrote up to last week the next day 11 September I went for blood test, still have bruise today.
 Then on Friday, 12 September, i returned to ask what had been the decision regarding referring me to the Endocrinologist as request by the Ophthamologist, A different receptionist was there, so I explained briefly what had happened throughout the week re my referral, and asked what had been the decision made.

She said it said in my file on screen that the Dr who called me Wednesday was going to speak with the Dr who had previously refused.
I said yes but what was the decision. she replied it didn't say.
I said but i need to know, as eye specialist wants me to see one.
She said, she is sending a message to the Dr to ask her as she is in surgery at the moment. She will respond when she gets time.
I asked when would I know then. She said she would call me or I could come in Monday and should know by then.

Later that day i found a voicemail message from the GP,,,
saying 'We have discussed your letter in our meeting with all the other Doctors - and the discission was if the thyroid function test comes back as normal there isn't any point in refering you to the endocrinologist because there's not much they can offer.
If you still want to discuss this your welcome to give a call back and I will be happy to speak to you'.

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Today I attended my first appointment with Musculoskeletal (MCAT ) team member whom was a physiotherapist, he assessed me but asked why had I been referred to their dept,as he said first I need a diagnosis and that is for the Neuro department, so will be writing to my GP asking them to make a referral.

I previously had another GP conclude that was what I needed back in 2010, after I had gone complaining of muscle weakness in my back and also in my ankles but didn't get anywhere so brought along my friend to support me and that time the GP (a different one to now) said he would refer me to Neuro as my back becoming so weak without pain didn't make sense. He told me it would take about 6 weeks for the appointment to come. It didn't come so I went to the surgery and asked the receptionist what was happening and she said there was no record of the GP referring me. It was soon after this that my whole life went pear shape and I lost everything I had in the world from home, to ID and thus no longer lived anywhere, so was no longer living in that area of London but living in various places on the coast and in the mountains in Wales,

So now having gone full circle I await to see what will transpire

3 weeks later after Physiotherapy

8/9/14

went to GP as requested. she asked why I had come.
I said they had phoned and asked for me to come in.

She looked on her screen and said your Xray shows initial stages of artheritus and no water.

I said that yes i know this for I had physio and she said slight and also I stopped taking water tablets because since doing the exercises no need. She said no there was no water showing in Xrays. 
I said well what ever it was that was causing the swelling has gone m ny knees are no longer swollen, look (i showed her my knee, now without swelling).

But I added that when the receptionist had phoned asking for me to come, they said it was regarding the letter from the eye specialist.
she said Oh i didnt see that, I will look.

She said 'Oh he wants thyroid test, but you had in february, it's ok'.

Look it says here ' i would be grateful if you would perform a thyroid function test, on this lady and refer her to the endocrinologist as she is symptomatic at the moment.'

I said yes he asked what was the Endocrinologist saying and I said I don't have one, so he said he would be writing to you to request one.

She said i'm not sending you to one, there is no need , for you had test and all ok.

I said yes but he spent a long time assessing me and I told him how i sweat and that my body vibrates/shakes and feels like my heart is racing, maybe an endocrinologist will test for other things.

I showed her the sweat I wiped from my forhead, and said look it is like this all the time,,,

She said 'well it could be menopause - take evening primrose oil, or I can prescribe, HRT.

I said no I don't have any other problems and i don't want medicines,

But what about the vibrating - what's causing that?
she said she didn't know.

I explained I have had long ago and told Endocrinologist of and he said it was double pulse, and gave me beta blockers said to take or would damage chambers of my heart, and he said he would meanwhile refer me to Cardiologist. I didn't like taking them and the appointment never came so I pushed for and got after about a year and a half, and the Cardiologist said my heart was fine.
I asked him about double pulse and he said no such thing,  But yes when I had surgery I had a pulse of 185 and they said I couldn't go home with so I meditated and got it to slow down.

Today I spoke before I came to Occupational therapist on - she said yes there is such a thing as a double pulse. I said to her yes but when I feel my pulse it isn't fast.
She said no it is not detectable on surface level, but it is to do with chambers of heart going too fast, irregular , like Tachycardia (which is what they said in hospital re fast heart rate)

the Doctor said she didn't see need for Endocrinologist , so i asked well why does the eye specialist. She said he doesnt know about thyroid on that level.

I said oh I see , you know all aspects like so you know Endocrinologist is not needed.  she said yes.

She printed me out the letter and I thanked her for her help and left.

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9/9/14
Physiotherapy appointment

3 weeks have past and I attended my physio appointment.
I told her how I was doing and showed her my chart I had made where I recorded what exercises I was able to do each day and any difficulties I had.  She took a copy of and said it was very helpful.

I told her how my back was weak and stiff on a few days each week thus I couln't do the exercises she had given me. She recommended I do stretching exercises to help my back, like bringing my knees up towards my body.

She asked did I want another appointment with her. I said I do gain from but I have got MCAT appointment next week so they will do best to decide, but i would like to stay with her as she knows my case now.
She said Ok go MCAT tell them of her and then ask them if I am to stay with her or not and if so book an appointment.

I asked her about the water showing up in a Xray , she said no - so that says the GP was lying when she said the Xray showed no water on my knees.
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9/9/14
Ophthamology clinic

I attended clinic to have further eye tests regarding my double vision, the woman was thorough and said I didn't need prism glasses as when i wore my glasses my vision was good. So I will wear my glasses more to try help support my eyes.

She said she could see my left eye struggled to stay and was weak.
She said to get thyroid tests and endocrinologist should be a few weeks but when I return to Consultant in December they will have a better picture. I told her how my GP refused to test my blood and make a referal. the woman was alarmed, she said but we need to see these results and you see a Endocrinologist.
I told her how the Dr had said no and that she knew more than the eye consultant on thyroid.
I asked was it due to funding, would it be paid for out of GP funds,,,she said no,,,it is just the consultant cant make a referal a GP has to. She insisted I go straight back to my GP and refuse to leave until she agreed to blood test and referal, as she said they need the blood tests etc to see  a picture of how my thyroid is functioning, as results can change. I saw her point as I was tested in february and now it's September.
Plus I'm due to see consultant again in December and what will he have to go on, he needs results to form understanding of the situation with my sight in relation to my thryoid functioning.

*****************************************************************

9/9/14

I went to my GP surgery and told reception I needed blood test and referal, they said I didn't need an appointment but would arrange for a GP to call me in the morning.

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10/9/14

A GP called and stated that the GP I saw on monday had written in my notes that i said I didn't want a blood test. I told him no this was not true and that she had refused to do as my tests showed me to be normal in february but that I had been to the hospital for tests on my eyes yesterday and the eye specialist I saw said they need the blood tests and for me to be refered to an endocrinologist.
He said ok he would do the form for a blood test, but regarding the Endocrinologist did I have any symptoms. I told him yes,,sweating all the time and shakes/vibrating. He said ok he would talk with the GP I saw on monday. (she is the GP allocated to my case) .

I later went to the surgery to get the form in order to get a blood test, it wasn't done, but I told the staff how i wasn't happy that the GP had lied and spoke of how she had re the Xray and also that she had written in my notes that I said I didn't want a blood test and I wasn't upset with them but this was not ok,,and that I had to bring an Occupational therapist to her to get anywhere as they had been fobbing me off for so long, and that maybe that had bothered her. They understood and got another GP to write out the form in order for me to get tests.

I am not knowing yet what is happening regarding the referal the the Endocrinologist.

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



Osteopenia

      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.

 

             Cognitions

             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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