Tuesday 23 September 2014

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


Tuesday 16 September 2014



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

Wednesday 10 September 2014

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.

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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.