Update ....... I think.....

[Ginge_31]

So, since changing from my poop to good gp, getting my referral, being given no information at said referral and having another battery of testing, we are still nowhere.

From the RA i found I'd written down some stuff wrong.

She advised she suspected rheumatoid arthritis, Juvenile arthritis or a third thing, with a possibility of Fibromyalgia as a secondary (YAY).

Now I have written down Ehlers Danlos as the third option, I now have no idea where this has come from as I have since received a copy of the report sent to gp and there is no mention. She just states she believes this to be 'a spondyloarthritis'.

Wound myself up a bit as after looking into all these options, I actually fit all the criteria for the hyper mobile Ehlers Danlos, except that isnt one of the things I was advised.

I received a letter stating that an appointment with the Musculo Skelatal assessment unit that I wasnt aware I had, had been cancelled due to missing results.

I sorted this with my doctor (as no answer on the numbers the letter gave) and got the missing bits sent over (turns out my mri's weren't in their preferred format). Called back to the service to re-book only to be told that even though they can see the whole thing is now complete, I will still need my GP to send an entirely new request and wait again.

Further to this, my pain is increasing every day it feels. The range of movement in my hands is quickly reducing. Where I only had pain in two knuckles of one finger about 6 weeks ago, I now have pain across 1-3 knuckles of all fingers, wrist pain and weakness, elbow pain and reduced strength and can feel the shoulder wobbling more and more.

I ca no longer properly stretch as this feels like my hip joint will pop out. And my wonky ass bone is even wonkier, to the point i now cant sit on a chair without my legs crossed up under me. If not the pain goes up from my wonky ass through my spine and pelvis, then starts to tingle as it all goes numb.

My hands looks disgusting, covered in really raised veins (which were not like this a few weeks back) and I have some extra lumps and bumps that were not here even two weeks ago. (I think these may be rheumatoid nodules, I'm not sure, I just know that my hands shouldn't be this disfigured this quickly).

I'm not sure what to do at this point. I've had most of me either x-rayed or mri'd. Most results I haven't even been given as I was told they were for my appointment in September. If this carries on i'll be long gone by then.

There's not really any clearer a way I can explain the pain I am in to these people.

They aren't willing to listen/believe or help and I can't afford to go private, or buy the genetic testing myself to prove/disprove EDS.