Help needed to get diagnosed...

sox8369

That is outrageous - how dare she say/do that - good for you putting a complaint in.

TOBRUK

Like others have said - change your GP. When you do see another GP I wouldn't come out with 'I think I may have M.E.' although I'm not suggesting that was what you did.;) Tell him/her your symptoms, how long you have been ill and suffering from them and that you really want to know what is wrong as you know your body and know that something is very wrong.

Your GP should then (as others here have said) do a lot of different tests to rule other things out. It may take a long time before you are diagnosed with M.E.

It took months for me to get a diagnosis, although this was 13 years ago and things may have changed; I was firstly diagnosed with M.E. by my G.P. (after months of being very ill) and was referred to an M.E. specialist. After a number of visits to the specialist I was then given a definite diagnosis confirming it was M.E.

I wish you well as the illness (if you do have M.E.) is really awful and very hard to control. There are however different degrees of the illness. Some are able to function and work with care, some are bedbound, and many who aren't bedbound find it hard to function and are housebound. I have quite severe M.E. although not bedbound I am lucky if I leave the house once every week to 10 days for a short while.

longtermlurker_2

My doctors aren't open on a bank holiday. Was it your usual one or an out of hours one? Thats what we have to use and whenever we have used them it seems that none of them want to be there and just want to get you out as quickly as possible.

Hope you get to see a more symathetic doctor and they can help you.

nursenancy

http://guidance.nice.org.uk/CG53
These are the NICE guidelines on CFS

http://guidance.nice.org.uk/CG53/QuickRefGuide/pdf/English
This booklet explains the tests you should have, and the diagnostic flowchart your GP should follow.
(just editing this to say that you don't need to click the 'add to basket' button, just click on the link above it and it will open in a PDF format)

Hope this is some help to you!

jazabelle

nursenancy wrote: »

http://guidance.nice.org.uk/CG53
These are the NICE guidelines on CFS

http://guidance.nice.org.uk/CG53/QuickRefGuide/pdf/English
This booklet explains the tests you should have, and the diagnostic flowchart your GP should follow.
(just editing this to say that you don't need to click the 'add to basket' button, just click on the link above it and it will open in a PDF format)

Hope this is some help to you!

That was really interesting, thank you.

I've had this condition for 11 years - seen many GPs and consultant specialists in various fields, and never has a single one of them asked me for a list of my symptoms. They all focus in on the pain, which yes, is important, but so is the fatigue, the poor sleep and the multitude of other syptoms. I have a list I've written over the years that I update regularly if I get any new symptoms, that I take to all appointments and I often try to give it to them, or read it out - and none seem interested.

That article emphasied the importance of all of it, really.

devildog

Change Drs! My son and I were fobbed off for years by our Dr who always brushed off my concerns. I finally snapped and went in(again) with a list of medical issues son was having, and stated I do not think he has..... or...... but could he have....(had resorted to try and diagnose myself online) No says Dr but we will do some blood tests (FINALLY) based on the results of those he was referred to a specialist(more tests examinations etc) and a diagnosis and more importantly treatment!! If this had been diagnosed a few years earlier then son would not have been in the mess he was!
Needless to say have not gone back to that Dr although we remain at the same practice-at different times since we have seen all the Drs there and found one that we liked -that listens to what is going on and takes appropriate action(if only they were all like him!!!)

Invasion

Yup, go with a different dr. Often GP's don't diagnose- you get referred to a neuro- but they are then left to help you with meds etc and are a very important part of "care". But the road to diagnosis with ME is a long one with numerous blood tests, extensive medical history etc. How long have you had the symptoms?

wssla00

I have been having some serious neuro features and we spoke to the doctor about CFS/ME and he explained it like this: If he gives me a diagnosis of CFS/ME then any symptoms that I have will be put down to that without the neuro looking at other explanations. He said if there is a chance it can be cured or managed then we have to go down that route first. If after all of that there is still no explanation then CFS/ME can be looked at. As he put it himself, "as we don't know an awful lot about CFS, chances are there are lots of illnesses or strains of illnesses in there that we haven't discovered yet just being lumped in with CFS because we don't know what it is" I understand his ideas on this and know how long it will be for a diagnosis but at least I know they are looking after me!

TOBRUK

wssla00, it looks as though your GP is listening to you and trying to get to a diagnosis. My GP did a lot of tests first (to rule out other illnesses with similar symptoms) before referring me to a specialist. This took months, and she had diagnosed me with M.E. before referral, but it was only after many visits to the specialist that he confirmed the diagnosis.

My GP asks to see me every 4-6 weeks just to see how things are and maybe change medication, if one medication isn't working she tries something different. Even though I have M.E., if I feel unwell and go to see my GP, she doesn't automatically put it down to M.E., she checks to see if it is something else. Every so oftenr she checks my bloods to see if there is something else going on.

lita's GP has a terrible attitude! To ask anyone 'why do you want to be diagnosed' is a stupid question! Anyone who is ill wants to know what is wrong with them, and likewise the doctor needs to know what is wrong before he/she can give any form of treatment. Yes they can treat the symptoms as far as controlling pain etc, but this isn't ideal.

WolfSong2000

I've known/had some absolutely awful GP's in my time, so can sympathise. I just kept changing until I found one I was happy with, and am so glad I did! The last GP, who I saw for just over a year (God knows why I stayed with him so long) was useless - I kept going every few months complaining of memory issues, and all he'd say, every single time was that I didn't have a brain tumor...reassuring to know, but also not helpful the third time I've seen him about the same problem. Turns out I may have epilepsy, but over a year of time that could have been spent looking into finding out what exactly is going on was just wasted, which is frustrating.