Welcome to my health blog. I am a 29 year old living with a range of strange and confusing medical symptoms and conditions including various functional/neurological disorders, Endometriosis, PCOS, Raynaud's Disease
and seronegative Hughes Syndrome. This blog is to document my struggle with doctors and the impact these illnesses have on my life. I hope that in some small way, my experiences will give others who are in similar situations some sort of strength or some form of comfort. Thanks for visiting!

Some may question my choice of title but if you are ill constantly and seem to always have your brain on pain and discomfort that's making your life very difficult, you begin to feel that perhaps you are a hypochondriac or what's worse, that other people see you as one. Whether you are or not, you still feel pain, sadness, and dispair which brings me to this quote from Harry Potter and the Deathly Hallows by J.K. Rowling:

"Of course it is happening inside your head, Harry, but why on earth should that mean that it is not real?" - Albus Dumbledore

Monday, 20 February 2012

Inaccurate Letter: Email #1

This morning I have received a copy of Mr E consultation letter dated 3 February 2012. On reading the letter, I have noticed some significant inaccuracies in the information from the consultation. I would be very grateful if you would please amend the letter to a more accurate representation which I will note below. I believe it is extremely important to prevent yet more inaccurate notes going onto my medical file which, in turn may make it more difficult for another doctor in the future to make an accurate diagnosis or request appropriate investigations. A copy of this email will also be forwarded to my GP.

"Thanks very much for referring [patient] who had a difficult time over the last 4-5 months with vague neurological symptoms"

There were no neurological symptoms in September, only the hoarse voice, lump in throat and evening cough. The voice disappeared entirely on the 11th December and neurological symptoms were initiated by an 'NIHSS 9 stroke event' (confirmed by D**) on the 21st of January of which there have been five more similar attacks.

"..with no firm diagnosis of an organic lesion and the diagnosis, as [patient]said, was made of functional stroke or functional neurological manifestation.

There have been no investigations into an organic lesion. The only MRI/CT scans were performed (without contrast) to confirm no brain bleed (22nd Jan), no scans have been performed after the first two episodes of which there have been six. The diagnosis of 'functional stroke' as written on the DV discharge form was made by a 'Dr Bd' who, at any point during time in DV I had not seen as he is based in S**.

"An echocardiogram, opthamology appointment as an outpatient and vasculitic screen were done, but the results were not available on discharge and  these are not available to me now."

I have no date for an opthamology appointment or any information relating to it. Although I have been told there has been a vasculitic screen, on further admissions to D** the results were still unavailable. An echocardiogram has not been done by D**. The only exploratory scan that has been performed is that of the one requested by me to Mr E.

As explained during my consultation with Mr E, unfortunately the discharge letters from D** contain contradictory events and inaccurate information which will be resolved at a later date. I feel it is important that the inaccurate information in those discharge letters does not encroach further into my medical records.

I would be grateful if would you could send a copy of the amended letter onto myself and my GP surgery.

Please would you also be able to send a copy of the ultrasound and report by Dr Bd.

Thank you very much for your time.

Kind regards,

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