WTF is wrong with me?

[SukiTheDog]

Symptoms:

Constant mouth ulceration
Nasal cold sores
Shivering episodes
Crushing upper abdomen pain radiating to back (have to sleep propped up
Can't lie on left/right sides
Nausea
Headaches
Fatigue
Rashes
Reynauds

Family history:
Crohns
Psoriasis
Ulcerative Colitis

Investigations done in 2014:

MRI, Ultrasound and CT of abdomen
Bloods
Endoscopy
All normal. Well, some tiny elevations but essentially "normal"

History:

Allergies (severe) hospitalised several times and used to carry Adrenaline pen as they were unsure of what I was reacting to. Was tested but, never had results. GP requested but not sure what happened.
Odd torso/neck/abdomen itchy rashes come and go.

Saw GP a month ago who said "you had many many tests 3 years ago, I see no point in going down that route again". In other words, "you're bonkers, there's nowt wrong with you. Go away and stop wasting my time".

I'm at my wits end.

Any ideas welcome...

It's rare but Behçet's disease causes mouth ulcers and a whole host of other symptoms:

www.nhs.uk/Conditions/Behcets-disease/Pages/Symptoms.aspx

How are you feeling today? Have you tried ringing the GP surgery (or looking on their website if they have info on there) and specifically asking for any of them have a specialism in autoimmune disorders? I had an ongoing issue for months and was fobbed off by GP after GP until I (by chance) ended up with one who had a particular interest in that area, and sorted me out easily. In another example, my daugther had an odd issue and the GP who saw her thought it wasn't a problem but was open that they weren't 100% clear so discussed with colleagues and came back to me - your GP really should be doing more for you. Even if you don't have a specialist in your surgery, ask for a longer appointment as you have several issues to discuss, go in with a diary of symptoms and all your history summarised in one place (they may not spot the autoimmune in your notes as it was so long ago) and basically say that your quality of life isn't acceptable, you need a referral to a specialist who will investigate further - bloods won't show up something if it's not being tested for! Be clear that you're not willing to accept "go away and live with it" as a diagnosis and that while you're not trying to self-diagnose, there are definitely conditions that your symptoms fit and that you haven't been tested for and you feel a referral is needed. Unfortunately it does sound like you are going to have to firmly fight your corner for more help. Good luck!

Hi Justasec. I slept last night for the first time in a fortnight. Midnight to 6.30am. Feel slightly better for that alone!

I think you are right. I will need to be very firm with them and ask for a referral because they won't spend any more cash on me unless I bang on the desk, as it were!

Apparently, when I have an episode, my colour drains totally before the shivery shakes start. DP thought I was having a heart attack in the night, last week. Poor thing kept checking I was breathing til I woke up properly.

Now, to get an appointment....

Glad you got some sleep. If you aren't already, definitely record symptoms, especially if you're getting them in your sleep as it's less likely to be 'all in your head' then. Make sure you note down what happens in the appointment too. Might even be worth seeing if anyone (DH?) can come with you too to help you if they try and fob you off with a nice strong "I'm not prepared to walk away without a referral to a specialist". Best of luck.

I second taking Husband with you..I did this and it did help and he could remember afterwards things I forgot-and was more calm than me--as I was in pain! so he could explain better than I could why I wanted more tests etc...

Managed to get an appointment for two weeks' time. Will see if DH can go. I hate going to my GP. There are signs up on the doors saying "Each appointment 6 minutes. One appointment, one problem". How to help your patients relax huh? As if we want to be there!

In 2 weeks?
I am lucky in that where I live you will always get an appointment on the morning you ring up-could you ask for a telephone call in the meantime if you are suffering?
My GP rang me once and through that arranged some more tests to be carried out.
Let us know how things go.it is horrible waiting and worrying about symptoms.

Our surgery is a mess. You have to ring in at 1pm each day for appointments but, you can never get through and when you do, they're all gone. Equally, when you go through patient access online, by 1.05.... all appointments are gone. So, you then have to go through the "is it an emergency" thing with the receptionists. If you say "yes" then it'd better be! Once, the GP said to my friend "that's not what we consider an emergency" 😐