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'.

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


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