Absolutely furious after reading my doctors notes - long

[gallifrey]

I feel like I have been fobbed off completely :(

Basically in 2010 I developed lower limb weakness which developed into paralysis, I was incontinent then started retaining urine. I was rushed to hospital for an emergency MRI as they suspected Cauda Equina Syndrome, I was told I did have this and needed an emergency operation on my back. Then I was told that actually I didn't have CES so they were going to admit me anyway and find out what was wrong.
I was then told I had Guillian-Barre Syndrome as the paralysis was creeping upwards and my breathing was getting difficult. There was talk of me going to ICU and being ventilated.
I had a Lumbar Puncture but they were pretty sure I had GBS. Then I was transferred to a Neurological centre under the care of neurologist I was basically just left in a side room and not seen properly by anyone, the neurologist saw me for about 5 minutes and said I was depressed!
This is what is written on my notes, instead of what actually went on!

I am so upset and angry by this, I have been struggling for 3 years. I still can't walk properly and I have a lot of pain.
I asked for a 2nd opinion at the time and was sent to a rheumatologist who diagnosed me with fibromyalgia. I don't really believe that diagnosis but I do have a lot of the symptoms.

I have been going to a chiropractor since february and these are the notes he was sent.

Is there anything I can do?

This is so distressing, I'm so sorry. I hope someone knows what you can do but failing all else perhaps complain and raise it with the management /someone senior? How very stressful on top of what you've been going through.

Bloody Hell . I'm so sorry .

Wish I had advice for you ,but naming and shaming is a start at least .

thank you, I will contact PALS and make a complaint.

ok....

perhaps you are depressed AS WEll?

isn't fibromyalgia really hard to diagnose?

can you go to a spinal surgeon?
or a pain clinic?

Did you have CES or GBS? Because if you didn't then its irrelevant as it was only 'suspected'. Nor did you actually end up in ICU, nor were you ventilated.

Doctors can run through lots of options but in the end it's only final diagnosis that is relevant.
.

I didn't know depression could cause paralysis!

I'm only saying what I was told at the time. I was led to believe I had GBS and was told afterwards by my GP that I did have it. However it's not in the notes I read today. The notes say I was depressed.
My chiropractor has seen my mri and said I had CES but the window of opportunity to operate had passed and basically I'm very lucky that I'm not completely paralysed still.
There were also some other issues that led me to believe they had the wrong notes because they kept saying I had trouble walking since I was 5 which isn't true at all.

then I would write to PALS

I have emailed PALS at the hospital where I was originally treated. Thank you everyone for your advice