The eye specialist agrees problem is most likely Neurological

I wrote to my GP back in October requesting a bone density test due to my easy breaks I had had. I hand delivered the letter to the surgeries mailbox.


No appointment ever came


Last week I spoke on my phone with a friend who is an advisor on disabilities. She said my symptoms sound like classic MS and to change my GP and ask for second opinion, which I'm entitled too. She told me that when I attend my eye appointment this week to tell them this.
I told her how the consultant I see don't seem to listen and when I showed him my MRI scan of my eyes going in different directions he said they looked normal.

I registered with new GP the next day and this week, yesterday 
Went to Hospital appointment with eye specialist.

I was seen by a new Dr, she had my notes and as soon as I arrived she wanted to discuss things in terms of my neurological reports she was reading.
She said they say he was sending me for blood tests and scans at another hospital.

I informed her I had a test where something was attached near my eye to measure muscle timing in twitches; It showed to be normal.

I added my brain scan showed too much white scars and he wasn't sure if I was MS or high Cholestral or high blood pressure. My blood test showed cholesterol higher than normal and I had informed him I changed my diet since. He said he would ask my GP to test regularly.

I told her I had just changed my GP as yes the last ones didn't seem to care and when I asked for thyroid test; that hadn't  been done since last year, they asked why and I told them because I was tired. But they didn't add in test for cholesterol. The results for my thyroid came back normal.

I added I had spoken to a friend last week who advises disabled people, she said to change Dr and that I can ask for a second opinion. I see the neurologist may not want to make a diagnosis but I need one.
I explained without one I was unable to receive appropriate housing and that I live in a tiny room and have to climb to get things from boxes piled high. I told her I break easy and have poor co ordination and balance. The housing services need diagnosis to help me.
This Dr took notes. She said It wouldn't be he don't want to make a diagnosis but that he can't.

I said I was due to go to new GP for check, procedure and was thinking to ask that they requested a diagnosis from the Neurologist, then maybe something would be decided.

She examined my eyes and said the optic nerve was ok. She added she didn't think it was Thyroid eye disease, as I didn't have enough symptoms, and I agreed telling her how previously in 2009 when I had my eyes hurt and protruded and my lids were red and puffy, but this time I only had double vision and one of her colleges had said initially it was the muscle in my left eye being too tight.
She agreed and said she would send me for tests of my eye movement. I await the appointment. She believes it is Neurologically caused.

Discharged from fracture clinic,,,,health update

Today 3 August I attended the fracture clinic and had another xray taken on my left wrist.
All is well now,,,I nearly have full range of movement in both wrists, no pain.
The consultant said it was the Dorsal Radius that was fractured.

I asked him about my bone density but he informed me it doesnt show up in MRI as bone density reduces also when strapped they couldn't use, so he is writing to my GP requesting an appropriate scan.

I also spoke with a GP at my surgery yesterday where I requested a blood test for my thyroid function as I haven't had one since last year, and recently I have become extremely tired, and also after activity I take days to recover, this past weekend my bones ached much all over my body, they now are feeling better, but my balance was bad a few days back, where i needed to use my hiking sticks to walk as I felt very unstable and as though I would fall,,,,which yes I did fall at the weekend, but onto grass and was unharmed. My right ankle gave way buckling underneath me, today it feels weak and I felt somewhat unstable but stamped my feet as I walked to try to feel them on the ground.

I am yet to go have my blood taken for the test, and am now looking to do next week.

I changed my diet so am losing weight, no longer drinking cows milk, I replaced with Rice milk and Coconut milk, which has added calcium, which today I also discussed with the consultant who said to consume calcium and omega 3 to help strengthen my bones.

If my blood tests show anything other than normal I will update on this blog.

The MRI scan shows left wrist was fractured too

Following on from my last blog post on the 6 July I awaited my MRI scan which I had on the
23 July to see what was occurring, the results of which I received at my appointment at the fracture clinic last week on the 6 August. The consultant showed me that yes the wrist had a fracture.

He asked me to return in one months time to have Xrays done again on it and to see him after. He also asked that I saw the physiotherapist that day.

The physiotherapist gave me a range of exercises to do, and asked I returned in one week, which I attended the appointment with today 12 August. She is pleased with my progress and gave me extra exercises to do and asked I return again next week.

I also went to my appointment with my Neurologist last week 7 August. He examined the strength of my wrists and suggested I got balls to squeeze to help strengthen them.

He had the results of my SFEMG tests and they are normal.

My blood tests showed high cholesterol which he said he would write to request my GP tests.

I told him how I had recently changed my whole diet and removed all dairy from it and very low fat, so that should change the results.

I also told him how I had been swimming and that was really helping to reduce the swelling in my legs, I used a float whilst wearing my splint and could swim somewhat. He said this was good as it was safe.
He told me how using both arms and legs would help build nerve pathways in my brain that could help my coordination.
I told him how I now was wearing boots to make me aware of where my feet are. He said this was good also and added that I should get some hiking sticks as moving my arms as I walk would also help. I have ordered some on line and await their arrival.

The boots make my ankles ache but I hope in time they will strengthen them.
Today as I walked I noted I could feel my feet in the boots but my visual/spacial perception is out, I explored further as I awaited at the bus stop and noted my right eye sees things at normal range, but my left sees things closer range than they are. I had noticed yesterday as I walked how the ground seemed so close to me, and thing appeared somewhat flat, like 2 dimensional. I further come to see that when I was sitting down this was not the case, it only occurred as I stood or walked.

My wrists are improving I am able to drive again, ( automatic) and type so I have returned to my work.
The right wrist is nearly normal and the left is stiff to bend in downwards and upwards position and weak but stronger than it was. All swelling is virtually gone. only the little finger on left hand and the one next to it have limited range in bending. So I believe they will return to normal if I continue exercising.

My next Neuro appointment is not for another 6 months so for now it's down to me, I haven't had a test for a long time for my Thyroid so I suppose I should arrange one soon. My tiredness fluctuates and also the energy I have each day. My jolting is quite a lot throughout the day but more so when tired. the vibrations I feel are simular occuring mainly in evening, but yes i can feel them as I type now and it is only 3.20pm. The neurologist said it was nerves that were causing, which I told him I am taking vitamin B for and also some Chinese tonic.

Caste off right wrist

Following on from last Monday the 29 June 2015.....

Tuesday 30 June 

I called the fracture clinic but each time it was answered the phone went dead, so I decided it would be a good idea to go to the fracture clinic by bus again.

I arrived and asked the receptionist what the Dr had said, she said she had told him but couldn't remember what he had said.

As I had approached the desk the woman whom had plastered my wrist was there and recognised me. She said I only put that caste on 2 weeks ago surely it's not coming off already.
I said no but I wasn't booked in to clinic until August and wasn't prepared to wait until then to have removed so was trying to sort out an earlier appointment or I would remove it myself.
She agreed that is was too long for the plaster to stay on.
Then the senior arrived, she asked what was the problem. I explained about my left wrist needing a MRI scan and maybe a plaster, but due to the long wait for the scan i was not due to see Dr until August. She agreed that was far to long to have right wrist imobalised for plus she recognised the need for my left wrist to be xrayed; as the first xray did not show a fracture but this was quite normal.
She took my details and said she would speak to the Dr the next day and he may arrange for me to come into Thursdays clinic.

She did this and called to say come in Thursday to have plaster removed and have both wrists xrayed.






Thursday 2 July

The xrays were done, and I went to see the Dr, he said I no longer needed the caste as the fracture had healed (5 weeks). It hurt when I leaned it certain ways but he said it was not the bone but the muscles and tendons and to just start using it.
He said he wasn't going to plaster the left wrist as it still isn't showing any fracture which is why he has asked for the MRI scan. He will see me after I have had it done as arranged.

I continued to used the cold and hot water on my legs and also on both wrists. It has helped loads to reduce the swelling in my legs.



My right wrist has improved further since last Thursday but is still weak and painful at some angles.

I found a video on line to copy the exercises,
which most I do fine.

I use both hands, but keep the splint on the left wrist.







Meanwhile on the same day 2 July I received 3 letters regarding my benefits.

1, Stating that the ESA had not received the sick cert i had sent.

2, Housing benefits informing they had yet again suspended my claim; which was following my delayed rent payment of 3 months that day. the suspension was due to ESA informing them that I was receiving their benefit.

3, ESA informed me that I was not entitled to ESA as I had more than the minimum income coming in.

So today I called Housing and they said I need to send proof of that decision to get the suspension lifted.

Also today  Monday 6 July  I received an appointment to see the Neurologist in August, therefore my GP's request for an earlier appointment had been productive, so hopefully the results from the tests done will bring me a diagnosis.

MRI scan 23 July , so caste on til 6 August, plus benifit games

Monday 22 June

I called MRI dept to ask if an appointment had been booked. Yes , 23 July.
I couldn't see why I was having MRI scan so long after the break; done on 9 June.
I was instructed to contact the fracture clinic once I had an appointment date, to book to see the DR.

I tried calling, but they are far too busy, tried various ways to access the booking system but none lead to the fracture clinic system.

Tuesday 23 June

I decided it would be wiser to go by bus and speak in person to the receptionists at the clinic as the date would leave me in a caste too long on my right wrist and my left was still in a soft splint and in need of a caste.

As I was about to leave my home, to catch a bus my friend whom is an OT called to see how I was regarding my first break. I informed her of my second break and what was occurring.

She told me how it was common to use one soft splint when both wrists are broken, especially when the person lived alone. I told her though that the Dr had asked how I would cope with both in plaster and I had told him i would manage somehow and so wanted both, in order to heal quick.

She told me the MRI scan would be done as a way of seeing my bone density and also to see what is going on with my wrist.

she told me people get stiff joints after break because the circulation is not good in the extremities and I should place it in cold and hot water, to help pump my circulation, in order to bring down swelling.  I did this and found it very helpful.
That is to place the swollen area in cold water for 30 sec, then hot for 30 secs, and repeat 7 times in all. eg 3 and half minutes total.

At the fracture clinic I informed to receptionist of the situation, she told me she would make a note of it for the Dr who was due in for clinic on Thursday. I said he wanted an appointment booked after MRI so she gave me one for 6 August. I expressed how that didn't sound correct as my wrist was broken 28 May, plus my left wrist was not going to be in plaster until then and needs to be.
She said she would make note of this.


Friday 26 June

I received 3 letters from the benefit agency.
1 saying my sick cert was only for a week, but it wasn't.
I noted the second was the form I had answered questions on the phone to when I addressed my claim, the previous Thursday 18 June, which was to start from the Monday 15 June.
In this I could see the worker had filled out stating it was until 22 June, not 22 July.

I called the office and discussed this matter with another worker and was told not to worry as that was normal; to give one weeks grace, therefore they had , and hadn't received the cert yet.

I then addressed the third letter I had received, stating I may get my benefits stopped as I had failed to attend the assessment for work on Monday, 22 June.





This I knew nothing of, plus it is not actually possible for them to have pre booked it, as I called only on the Thursday, so how was I supposed to have received notification of appointment prior to the following Monday, but it stated that I had until today Monday 29 June to explain my absence.
Which I add they required to be done by post as no number was on the letter/form I received.
I addressed it therefore with the worker I was discussing the other aspects of my claim with and she made note of it in my file.

here is the form.
 Plus as shown on the envelope it came in, it wasn't even posted until  Thursday 25 June, the day prior.

 

Also on Friday the Dr's secretary  called me as I had left a message on her voicemail on the Monday. she said they most likely would have informed the Dr on Thursday, if not come back to her.

Today is the following Monday and no post regarding it has arrived, therefore I most likely will be returning to the clinic tomorrow to ask what his response was.

Meanwhile the constant use of my legs without using my arms to get up has taken a toll on my back which is feeling weak, plus for some reason my legs are swelling around my ankles, calfs and knees,,,and this is causing stiffness and pain. Although I have purchased a large plastic box to fill outside with hot water and also have another filled with cold water and I am using to help reduce the swelling in the same way as I was instructed to do for my wrist.

My right wrist is feeling stronger and only hurts if I carry things too long now, and my left hurts still at certain angles and bearing weight, but otherwise the pain is much reduced.

Both wrists fractured awaiting MRI scan for left one

Tuesday 9 June

The next day after writing my last blog entry,on the 9th June I fell again; just walking along pavement with a friend. I tried to save my right wrist and landed on my right elbow, but my left hand landed with my palm, and this time my right knee took some of the fall.
My friend had to lift me up and both arms hurt.

I returned home but my left wrist felt broken so I took a taxi to a London A&E.
The nurse I think a senior, examined my wrist quickly and sent me for xray of both wrists as my right wrist was due to be xrayed again.

After a long wait I was seen by the same nurse. He told me neither wrist showed any fracture in xray.
I knowing from experience, told him I believed both were fractured, as the left one was more painful than the right had been.

he explained that the reason they xrayed again right wrist was because sometimes fractures to wrists dont show up straight away but do after 10-14 days; but it is not showing, but due to pain he put soft splint back on along with soft splint on left wrist.



I phoned the Occupational Therapist who is dealing with my case, and left a message on the Monday, and again on the Wednesday too say both my wrists are broken. I still have not heard from her.

I struggle to get dressed etc, lifting even a cup was painful, so I decided by the Sunday I would call my GP the following day to request a sick cert.



Monday 15 June

I called the surgery early and asked that a GP wrote  my sick cert and was told they would call me in the afternoon.

Then I went to Hospital that afternoon to my appointment with the eye specialist.
Last time he told me the tests did not show my eyes were seeing double vision, to which I informed him yes they do though at close range. So this time I decided to bring the image from my MRI scan I posted here previously that clearly shows my eyes are facing different directions. He looked at and said they look normal.
He examined the back of my eyes and said they are stable.
I still have double vision at close range.
he said come back in 6 months for check up.


I whilst at the hospital also went to Neuro dept to see see if I could arrange an earlier appointment to see my Neurologist, as I recently had SFEMG tests and now tripping over and breaking. Previously he had told me to do this as the appointments are so far away and I wouldn't be seen as priority.
They said my appointment is for October and now no new ones until next year. They told me they couldn't do anything about it but if my GP requested I was seen sooner they could bring forwards, so told me to ask GP to request.

I returned home and the phone rang, it was a GP.
He asked what work do I do, I said I'm a writer.
He replied that I can get some program that I can speak to and it would type.

I informed him that yes I can type on touch screen and will try to do some but it takes me half the day to get dressed so I am not able to do work as not much time left in day.
he agreed to write it , asked when to date from I said today would be fine.

I also informed him about how the Neurology dept had said for him to make request for me to speed things up. He said he would fax them the request.



Tuesday my back felt very weak from needing to continuously get up from sitting without holding anything. I also was feeling very tired.

Wednesday I collected the sick cert, it was given up to 22 July.


Thursday  18 June

I attended the fracture clinic.
The Dr straight away asked why was my right wrist in a soft splint.
I told him that in Cornwall they had said the fracture don't always show up but they put in splint anyhow.
he said but the xray you had last week shows it is fractured!!!!!

I told him how the nurse had said it didn't show any fracture but yes I knew it was for I know the feeling of.



He asked to see my other wrist which I showed him, it is still bruised (this is a photo I took of it a few days prior).


He said I needed to castes but was concerned with how I would manage.
He said he could do surgery on left so I wouldn't need 2 plastered, but i said No don't do surgery unless you have to. I have managed with 2 soft splints and a caste is not much different and still if he did surgery I will need something.

He said to get right wrist plastered and left wrist to have MRI scan.

I gave the form he wrote to nurse whom informed me the MRI dept would contact me with a appointment and that once I had one to contact them and they would book me back into the fracture clinic.

I also had the right wrist plastered.




I came home and made calls to all the relevant agencies re my benefit claims.

I am still awaiting my housing benefit to be paid, they said it will be paid on the 29 June, thats 3 months over due. The guy i spoke with said 'This is not normal practice, usually if they work out after payment date they pay what is owed ;say 2 weeks and then pay the rest later'. He said he would put in a request for it to be paid sooner.

All these things left me exhausted so on Friday I was not able to do much at all.
My body was shaking and jolting and vibrating inside.


Today Sunday 21 June

I still am awaiting contact re my MRI scan.
Left wrist still is quite painful if I try to lift anything or turn it in certain directions, the right wrist feels more comfortable in the caste, although a bit sore where it rubs at wrist because I am having to use it. I can lift light things but only from above angle.

Managed to buy some plastic sock things to put on my arms whilst I shower which I used today and was fine but can't hold things too well with, but nice to have shower.

Legs are a lot better, but tired.
Also I am sleeping loads.

Had tests, awaiting response, meanwhile fractured my wrist after tripping on kerb

Time for an update I feel.

I have been delaying as I have had tests but was waiting  for results but meanwhile fell and fractured my wrist so will update now.


 Following on from my last post I went for SFEMG tests

The Dr who carried out the tests said she could not see any noticeable signs of anything wrong, but would need to examine the results closely and then send results to my Neurologist.

Meanwhile I had been attending weekly appointments for deep muscle massage and it has been very helpful.

At first the lumber area of my back was very stiff and locked; had been so for what seemed like years, but once released didn't lock back again. This is brilliant and surprising. There was also a knotted muscle in my left shoulder blade which was unknotted.

Next the muscles in my left shoulder was very tight but the masseuse said that the problem was not really the shoulder but coming from the neck/base of skull so did much work on massaging my head.

My legs need much more work, the muscle at the back of my thigh was so locked and tight the masseuse chose to use some machine on it to unlock the muscle, as it required so much pressure. It did unlock but it didn't remain so after time, but locked back again, but not back to as bad as it was originally.
Also muscles were knotted in my calf's which she unlocked. 

The following week she worked on my arms where the tricep was knotted where it joins to my elbow, plus on my forarm at front knots were found to on both arms these knots occur. The the unknotting is very painful , but once done they no longer felt so tight.
prior to the massage of my arms I would find my hands clenched and muscles held very tight, but since them being first released I tried to refrain from holding them tight, and they have not been as bad.

Each week she alternates massaging either the top of me of the lower area. Each time my legs or arms were locked but less so, and after 6 sessions the leg muscles origianally locked were more relaxed, although then the front of my thigh muscles had knots forming, But the massage was being very effective.

My ankles remained weak and ached but not due to knots. She said my feet were too loose and were not straight.

My knees also remained weak.


So the massage is very helpful.

I started swimming and this really helped the swelling around my knees and was loosening them up.
I also helped to stretch out the muscles in my arms.

Then all now has had to stop, for I tripped on a kerb; something I often do, due to some lack of spacial awareness of my feet. I put my hands out to save myself , and landed with my palms on the ground and my left knee/shin it the floor too; and it is my left leg that is the weakest with the most swelling normally.
I felt the pain in my knee and right arm after and due to numerous breaks and fractures I recognised the feelings as that of a fracture, but was miles from a hosiptal so strapped my wrist and arm with some horse bandage and decided to see how it was the next day.

The following day it hurt the same as a fracture would. I needed to know what treatment it needed so I asked to be driven to the nearest hospital, I was far away from where I live in London, I was in Cornwall.

The Hospital examined my wrist and concluded it could be a fracture, they sent me for x rays, but said where the fracture is in my wrist may not show up in xray, so would put in splint anyway. It didn't show but was splinted. I was told to come back in 2 weeks and that I would not be able to drive with it or one arm.
 After a few days I asked that someone drove me and my car back to London as I was very limited there, not being able to drive or walk as my knee was very stiff and swollen after the fall.

I am having difficulty in London getting an appointment into the fracture clinic as such short notice, but have just discussed ways around the obsticle's  with a receptionist so all should run fine.

Obviously my swimming has had to stop and my massage too as I am unable to drive currently but once I get the all clear I will return to these things.

Since my fall my leg has gradually improved and I have massage with my left hand and used hot and cold compression on the swelling.

I am due next week to see my eye specialist re my double vision, which is a on going assessment check up.
I have recently obtained new glasses so all is best it can be. My double vision varies each day and is dependant on the distance I am viewing at as to how much it causes a problem; mainly being close range like reading is where it occurs most.

Neurologist views in my recent MRI scans

Time for an up date,,,,,I recently was assessed for disability and was granted benifits to help with my daily living.

I also was able to access my medical files at my GP surgery,
The information I gleened I will address at another point, but for now I want to cover my appointment I had with my Neurologist yesterday.

He showed my that on my scan I had white patches
He said they do occur but I have more than what is considered normal for my age.
He said it could be MS, but if so then there isnt that much as is usually seen. It could also be some other illness I don't recall what he called it,but said it would be due to too much cholestral...or high blood  pressure. I informed him that I have always been told my blood pressure is low, good.

I told him of how my arms hurt, where the muscles join the bone joints, and had done for a few days. he asked me to lift my elbow but after several times I was weak, then he tested my resistance and he noted I have muscle weakness.
He therefore needs to do more tests ,,,he sent me for blood tests on several things, plus is arranging for me to have tests done on my nerve electro-conductivity.but the facilities for are at another hospital so needs referral.

Today I recognising that I hold much tension in my body bought some Chinese herbs,

Ginseng Feng Wang Jiang
to strengthen me, as it works as a tonic.

Xiau Yau Wang
to calm me down

Zhibai Dihuangwan
to reduce the heat inside me

I have also booked myself an appointment for deep muscle tissue massage

I feel now understanding of my health is forth coming .

I have started a new blog entitled

My Psychological journey as a Tavistock puppet

click to read , I will add to as I find time and energy

Neurology appointment brought forwards from August to March

OK time for an update

I returned home recently from time away at a friends, 

it was late evening, maybe 11pm. 

I found post in my communal hall way which included mail from my GP surgery.

Inside was this letter 

 

And this questionnaire , 

which I wrote on the top of and returned yesterday with an accompanying  letter, you can see below.

 

 plus this leaflet.

 

I saw it was pertaining to knee and hip joint pain. Which I don't have problems with, So was not sure why it had been sent.
 

The following morning I proceeded to go about sorting out other aspects of my life. 

Then the post arrived, so i went out to see if any was for me, and no none was, 

but I saw on the shelf where communal post is stacked that there was a letter there 

for me.; which wasn’t there when I had arrived late the previous evening and found my other mail.

 It also was obviously not delivered that current day either, as that post was still on 

the floor. So one can only deduce someone had placed it there during the night or 

early morning.

The letter was from the Neurology dept and it read that I now had an appointment 

for March , rather than the previous one given for August.

I therefore decided not to follow the path offered by my GP surgery of making an 

appointment to see someone re my joint pain, as no I do not have joint pain 

but muscle weakness, amongst other things.

Noting   I still had not received any communication around me accessing my medical files 

that I requested back in January (5th). I decided to return the questionnaire along 

with another letter requesting I can access my files.

That was yesterday, this morning I received a call from someone at the doctors surgery @9.47 am

 ( 24/2/15)
they didn't say who they were.

she asked if it was me and said they had found a questionnaire brought in by me, 

which she wanted to discuss. 

I told her the questionnaire was delivered with a letter. 

She said yes she had seen and would get to that.

She then went on to say that I should have made an appointment when I returned 

the questionnaire. 

I said I didn't think the questionnaire was applicable to me, as it was about arthritis, 

and i don't really have arthritis, and am waiting on the Neurologist to give diagnoses 

and had appointment with soon. 

I told her yes I do have problems with my knees but not because of my bones, 

but due to muscle weakness, I have had an x ray done of my knees and it showed 

no real problem with bones.

She said but it has been sent to you , so they must think you fit the criteria.

I asked who that was,,,,she said she didn't know but most likely the person running 

the clinic. I asked what was there profession, she said well they are clinicians.

I said but I have an appointment with the Neurologist soon and would prefer to get my diagnosis first. 
then after I will come.
She said but we have an appointment slot we could give you for tomorrow, 

you could come in and discuss it with the clinician.  

I said no, I am tired and drained enough, and have many stresses in life, 

and these things tire me and that's not good , make my health worse.

so I would prefer to wait for neurologist, he was waiting on my MRI scans 

I had done recently, for my brain and spine, and now after seeing them he has 

forwarded my appointment from August to March. 
so I feel he should diagnose me before I see anyone else.

She said but this appointment is to help with your knees and hips joints. 

I said but I don't have any problems with my hip or knee joints, yes i have problems 

with my knees but not due to the bone joints, but the weakness in the muscles, 

and

 I
went to physiotherapy for that and was given exercises to do, that help and I do 

everyday but still my muscles are weak.

and yes also muscle tension in my hips cause me to lean, I can't stand up straight.  sometimes

due to muscle tension. 

I feel I would do better to follow the Neurologist path, as it does seem to be more 

about nerves than bones, I don't have pain but muscle weakness and I sometimes 

collapse, and become like paralysed, so I want to see what neurologist says first, 

then maybe see clinician once diagnosed as they are for  the arthritic path, and I don't have arthritis really, yes the scan shows I have 

nodules on my spine, but I don't think they are caused by arthritis. 

She then went on to address my letter re seeing my files.

She said it required I paid a £10 non-refundable fee, 

and I needed to come in and sign a form for. 

I said but i came in and asked what I needed to do, and was told I just need to 

write a request for and some guy who she named would call me in a few days but he never called.

She said well you was misinformed- you need to pay £10 non-refundable fee, come in and sign form and then someone 

will call you. 

I said OK I would do and we bid each other farewell.

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

I also in found in my files a letter written by a physiotherapist I went to in 2013, who said I didn't need a scan.and gave me exercises to do
..here it is

ok other things are happening with all my benefits,,,,all a mess and muddle, none my fault but for now I will leave, as I am due an accessment for PIP soon.

Here are my MRI Brain and Lumber scans

Last week I had a MRI scan of my Brain and Lumber portion of my spine
I managed today to gain copies of the scan and have selected some photos to show you.

This one on the left clearly shows my eyes are not in line.

I looked through the Brain scan but could not see anything noticeable, nor did the guy who did the scan.
Neither of us are specialists so I await the Neurologists observations of.

As you can see my spine is a mess. I have had surgery on L5/S1 discectomy 1998.

So I await my appointment for diagnosis in August this year, unless it can be brought forwards somehow.

Meanwhile also I recieved a date for an assessment for PIP,,,the new disability benifit.

My new chair the Occupational Therapists arrange for me is helping me loads to stay seated longer each day.

I am still awaiting the OT to assess my housing needs.

I also have not recieved any communication from my GP surgery regarding my written request I made weeks back to have access to my writen files.

Since I last wrote I attended the fracture clinic and was told to leave my finger strapped for another week then remove. I was told the swelling would take time to reduce, and that the x-ray showing White around the edge of my bones was not good,,,,and if I was to have another break soon they would need to check my bone density.

Occupational Therapist
The OT came, she saw how small a space I live in and how damp it also is,  due to water keep filling up in the cellar, causing damp walls and damp inside my cupboards, which is rotting my cloths. She recognised not much could be done to improve my home environment as it was already too cramped.
She therefore is referring me to her college who deals with housing, to come and assess me.

She recognised I didn't have appropriate seating and so arranged for me to receive a suitable chair, which will be delivered next week.

The house is too cold and damp for me to stay for long in as the convector heater on full all night still isn't enough to take the dampness from the air. Plus there is mold on the walls that is not good to inhale, so I spend time away as much as possible.

Regarding my rent, due to the delay in payment from my Housing Benefits,  I mentioned in my last post I received a letter from the Landlord demanding a £30 payment for the delay, and threats regarding if it was to happen again, that he would not accept my current arrangement I have with him. I wrote an email to Housing Benefits regarding this, asking for help with the payment, plus brought into their offices the letter for them to copy, I await their response.

Regarding my receipt of ESA benefits I am unsure as to where I stand, I received a text asking for a sick cert from December, in addition to the 2 letters I recieved. I havent been to my Drs to ask for as I was told last time she wasnt happy to give me without a diagnosis.
Although I did put in a written request on 5 January to have access to my paper files, was told it could take a few days for them to call to arrange, but as of yet still havent received the call.

Next week I have my MRI, brain and lumber scan. They may or maynot show the cause of my problems, but at least should go towards helping a diagnosis to be made regarding my current health issues.

Ok here is my long overdue update.....

Since Friday 28 November 2014

I want to point out at this stage that there are many aspects to my case; threads of stresses in my life that I believe go hand in hand with my health problems. I therefore would like also today to introduce some of those aspects to...

namely that I am also a Targeted Individual, which was brought to my awareness firstly in 1996, whilst I pioneered and developed services for  Women Crack cocaine users here in Britain.

Here is my blogs regarding the matters:-

click to read

Surveilance/ Gang stalking call it what you will this is partly how it’s done

Monday 11 November 2014 I published this blog

women and Crack: Responding to need
-------------------------------------

With these aspects in line I will continue to blog my daily life,

the following day Saturday 29 November 2014 I tripped accidentally on my computer wire and it fell and smashed. My tablet no longer was able to connect to charger so rendered useless, and my phone will not permit me to use internet for social sites. I believe there is a vested interest somewhere in me being online, so said ok I will focus my time on others things and see what pans out,,,,,within days whilst visiting a friend I told her how of this and she had been given a computer the same day mine smashed so she loaned it to me.

The following week

Monday 8 December, I attended my appointment with the eye specialist; he stated that in my files it said I didn’t have double vision. I assured him I did and that the Woman who tested my eyes remarked how my GP’s needed to do the blood test and refer me to an Endocrinologist but they refused, instead they only tested my blood which came back ok.

He tested my eye movement and noted the defect in the left eye.  He placed drops in and looked closer with a machine, he said they were fine at the back and noted my lids were not. I told him about the possibility of me having CP and that causing the muscle tension in my eye; he said no it looked like Thyroid eye disease. He asked my history regarding Thyroid eye disease, I informed him how I ‘cured’ it previously and explained how, although he seemed to shut off at this point; closing his eyelids. Maybe he was very busy and didn’t have the time. He asked I arranged to come back in 6 months to be checked again.

Thursday 11 December, I discovered after checking my bank account that my benefits had been stopped.  Including my Housing Benefit that was due, at that time, after phoning around to find out why, I come to be told that all my benefits had been suspended because  I hadn’t returned a for from ATOS that I had never received. 

I therefore attempted to email Housing Benefit all my details they required including my bank statement for previous 2 weeks.  There was much difficulty sending the email but eventually it registered as sent.

Here is the email I sent

To whom it may concern,

I write to you regarding the suspension of my Housing Benefit claim.

I now am of the understanding that this is due to ESA informing you they have closed my claim, via your letter I called your office regarding the matter, as I had NOT been notified by ESA of this happening but had received my payments as normal upon the receipt of my sick cert's, so was led to assume all was in order. I spoke with someone regarding the matter, whom shared my understanding of what had happened. My assumption was there may have been a delay in ESA receiving my sick cert and so they pre-empted and sent you notification of their closure to my claim.
The man I spoke with said he would check on the system regarding this and so lift the suspension and that if it was other he would write to me.
I haven't received anything as of yet, but found yesterday my ESA payment was not in my account as expected, so I called ESA.

They informed me that I hadn't returned the questionnaire sent to me by ATOS. I shared no I hadn't received one.
They therefore had closed my claim, but are resending me the questionnaire; which I am to return and then they will decide whether or not to pay my benefit.

I then called your office and spoke with a man who I explained all this to. He explained that I needed to show you my income currently, as I am now only receiving my working tax credit.
I attached the bank statement, circling the payments from working tax credit and also any book sales. These are currently my only incomes.

I hope I have clarified things sufficiently, as I am due a rent payment next week and hope all can be resolved by then.

Please inform me if anything else is required for you to process my claim.

Yours Sincerely

Louise Clarke

I was low on electricity, (on a  metre about 38p), and therefore intent on going to stay at my friends to keep warm, but needed to remain in London to receive the form for my medical assessment, to kick start my Benefits.  It arrived the next day, but to my surprise I had somehow gained £10 on my electricity metre, so I could stay but only had no other money but petrol; so I drove to my friends. Friday 12 December.

The following Monday (15 December) I called the Housing Benefit service re payment for my rent and was told the email had arrived but the document I had attached had become contaminated and wouldn’t open. My rent now due I returned London the next day and went with all documents by hand. As I walked to the office I accidently knocked my knuckle on a chair at the bus stop (special awareness is not always good for me), it hurt like a break, throbbing but I continued on with my plans,  but it swoll up and showed internal bleeding, so I ,knowing how to strap a little finger when broken, due to the numerous times I had done in the past, I strapped it myself to save time and money I didn’t have for bus fares, as driving was painful with it and awkward.



Wednesday 17 November 2014, I could see the break may well be on joint and therefore need a splint, so I knew from past similar breaks strapping doesn’t not heal, a split is required, therefore I went to A&E, and yes I was broken on joint. The nurse said it was an Ulna something????????

-------------------------------------------------------

Thursday 18 December

I attended my appointment with the Neurologist, he assessed my physical abilities and I filled him in on my life of difficulties that were in line with Cerebral palsy symptoms, he noted how my balance was not good. I explained to him how my knees are so weak and was very swollen, but since receiving physiotherapy exercises to do, the swelling reduced soon after, and also initially I could not stand on my right leg, due to no balance, but have improved through doing. He was pleased with my attitude towards trying to help myself and do the activities that would.

He said it would be hard to diagnose CP now as it should be done in child hood. He decided to request MRI scans of both my brain and my lumber area of spine, to rule out any problems there.

Friday 19 December
The next morning I received my next appointment to see the Neurologist again; it will be August 2015

but only had about 47p left to live on but petrol in my tank; so I drove to my friends yet again, to stay for Christmas period.
22 December 2014

I called the Housing Benefit re my claim, and was told it was in the in-trap to be done. I asked would it be done before Christmas and was told very likely as they were working until 5 pm Christmas Eve.

I checked my account each day but it wasn’t there.

Christmas Day at Beach

I returned back to London to attend my appointment at the fracture clinic. Monday 29 December 2014.
I was seen by the consultant and the Zimmer frame was replaced with a normal finger strapping. I am to return in 2 weeks, to see him again.

It is currently still swollen and hurts if it bends or gets knocked.

I also had received my appointment for my Brain and spinal scan, which is at the end of this month.


--------------------------------------------------------------------------

I have received 2 reminders that ESA need sick certs from my GP, in order to continue with my claim.
 Due the harassment I have received trying to claim this benefit I chose after the last Dr said she was not happy to give me one and decided based on me informing her I had an appointment with the Neurologist due, she agreed to write one up until that day. I decided I would go without, especially when seeing how my claims were being sent into turmoil.

My landlord had left a message on my answer machine on 23 December saying I needed to pay my rent soon or he would charge me £30 for the delay.
I called the Housing benefits again, numerous times and sent my landlord emails updating him on what was the situation, but I was told last week by other tenants he was not back at work until yesterday 5 January, and was also told by Housing since, they had sorted out my claim but the money would not be going into my account until the 5^th, and that this was to do with the banking system for Christmas.

Yesterday the money still was not in the account; nor today. I called and asked what was the problem and was told it was due to the large amount being paid, it needed clearance elsewhere also. So I wait patiently.

I also tried 3 times to phone the Tax office to inform them I’m returning to work. I had to therefore waste money each time calling and answering a machine all my details only to be told each time after there was no one available to take my call, on the third attempt I got as far as waiting in a queue listening to music for about 23 mins, then my call was taken.

Today 6 January 2015 after checking my bank account again I returned to find the post had arrived, and I have received a letter from ESA dated 29 December 2014, that I will receive ESA from 27 November 2014, may need a work focus interview and may need sick certs although that paragraph is so ambiguous I aint sure what they are saying but payments are being made.

Meanwhile yesterday I asked for a bank statement printout as I had more money in my account than I should, and it shows I have received a payment from JSA, which is Job seekers allowance, which no I haven’t claimed for but hopefully all will sort out soon.


And on Saturday 3 January 2015 I discovered that medical records I had of mine in my house have been removed, thus confirming further that the truth is not as it seems.

I’m due back at the fracture clinic next week and so hope to update on all then.

OT assistant Last week an OT assistant called leaving her details; I returned the call and stated I received her message.  Yesterday she called and left message saying she will come next week, I confirmed on her voicemail that I would be here.


Thank you for reading.

 'And ye shall know the truth, and the truth shall make you free.'
John 8:32