I'm stuck on a 'wait and see'

[Ginge_31]

Background....

Started having various joint pain issues and a wonky coccyxx over two years ago.

Spent a lot of time being told not to sit on it (yes a qualified medical professional advised me to just not sit on my own ass) and that it was just me being too weak.

I switched gps after I lost about 70% of the range of movement in my right index finger.

Immediately sent for scans, which showed damage to the joint, as well as thickening of the bone and tendon.

Had a referral for a rheumatologist, however the pain really ramped up quite quickly so this was moved up. Had the appointment and quite disappointing really. Painkillers done really work and so I was kind of managing just by counting down to this appointment where I would at least know a bit more. I now know less.

Basically told, definitely something, don't know what - lets wait and see for 6 months.

Also advised that I was hypermobile (had no clue) - which might me why my decreasing range of movement has been ignored, as it was still more movement than normal I guess.

Update...

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.

[AiMax]

Hi Ginge 31. I would suggest you could either go back to your GP and tell him you're deteriorating or contact your Consultant`s secretary and ask if your appointment can be brought forward. To wait for 6 months for the results of tests done is rediculous. You do sound rheumatoid but a blood test can tell you for sure.

In regards to EDS, I'm just about to go to my GP - haven't plucked up the courage yet. So what I've done is go through the condition and associated conditions and write down all my symptoms. Then I've asked around my family going back 3 generations to see if there are family with symptoms as well. I'm going to give all the info I can to the doctor so he has a clear picture from the start.

I work in the medical profession hence my answer to you. If you have a good GP he/she will listen and can be your advocate.

You shouldn't have to wait until September.

I wish you the best.

Jane

[Ginge_31 in reply to AiMax]

Hi Aimax,

I have booked to see the GP later this afternoon, so will be able to update him on my situation them.

I don't have information for the consultants secretary. Not sure if I was ever given some, or I've just misplaced it - both equally likely

I did have the Rheumatoid bloods done ready for my last appointment (08/03) and all was negative. Been advised that this doesn't rule it out however, just that the blood test would have been a confirmation for the diagnosis.

I got a Diagnosis Criteria form from somewhere on ehlers-danlos.org/ (I can't find the bloody thing now) and I've filled it all in. Gonna hand it over this afternoon when I go in to see the GP, see what happens.

Hopefully, I've got a good doctor, I hope you do to!

Best of luck with getting this all to your gp, hopefully they can at least give you an idea of whats happening.

[AiMax in reply to Ginge_31]

Thank you Ginge 31. If you want to contact your consultants secretary just phone switchboard at the hospital and they will transfer your call. She should be able to sort it out or at least direct you to the right department for appointments.

I hope all goes well for you today.

[gillianTS]

Contact your NHS region and request copies of your records, clinical reports and results, you can also request copies of MRI results mine are supplied on CD along with copies of radiology reports etc. If you applied now you will get these well before your appointment, your GP will not have access to these records and will only receive a clinical report and maybe nothing if you have seen multiple specialist referred by other consultants within the hospital. I request copies of all my results and clinical records at every appointment I attend regardlessof how some consultans frown and others say it will not say anything more than I have been told, I just tell them I have copies of all my hospital records and leave it at that. I recently decided to request copies from the hospital specifically from rheumatology because I felt I had missed out on internal referrals, I applied filling in the forms I downloaded from my hospital trust in my area and the records arrived in 18 days.

For hospital health records, contact the records manager or patient services manager at the relevant hospital trust. You can find a list of hospital trusts on the NHS website.

England:

nhs.uk/servicedirectories/p...

Wales:

wales.nhs.uk/nhswalesaboutu...

Scotland:

scot.nhs.uk/organisations/

[Ginge_31 in reply to gillianTS]

Hi gillianTS,

Thanks for this, have had a little look into this and will start requesting these over the weekend.

Hopefully I can pass it onto my GP and make sure he has all the available information.

I've only been under the one consultant at the hospital for this referral, however as they suspect I may have had symptoms a lot earlier than realised, it'd probably be worth me having all the results of all the other stuff that I've endured over the years.

[gillianTS in reply to Ginge_31]

The information comes directly to you and not to your GP, if you want copies of any of your GP records you have to request these separately from your GP, crazy but they are not joined up, my NHS consultant can see my blood test results that were carried out by my GP because these are loaded into the NHS system where the laboratory is but the GP cannot see any of my records, whether blood, MRI, inter departments requests nothing, so think of them as 2 separate businesses.

The only way my GP practice was ever able to see my NHS hospital records was when one of their new GP's had joined them from the A&E and still had her login details to full hospital records, this has now lapsed and I was told was an irregular practice...

Good luck and I hope this can help you going forward.