Recently I have a few updates about rheumatology, MRI, PIP and medical crowdfund.
I was seen in Rheumatology again due to my abnormal autoimmune blood tests. The doctor this time spent 3 minutes total telling me my skin is ok and then took me out of the room while I was still talking to him. I hadn’t finished and he made me leave. Shocking!!
All he does is look at my skin even though the condition he is looking for can affect organs only…
I have 4 positive autoimmune blood tests and he only cares about 1.
I don’t get referred to anyone for the other positive results even though my health is massively poor with chronic pain, chronic fatigue, sciatica, migraines and more plus 4 positive autoimmune blood test results and a perforated septum.
Now he only wants to see me once a year even though the last time I got the blood tests they were worse than last time.
Plus he hasn’t tested to see if the organs that can be affected are ok! He only checks the skin for sclerosis and that is it even though I have 4 different autoimmune blood tests all positive and very wrong! No one tries to see why for any of the other results. Rheumatology only care about the SCL-70 and nothing about the others which could be the reason as to why I have chronic pain!
No one does a thing. They just don’t care at all. I am here in extreme pain that got massively worse when my perforated septum started, plus the autoimmune tests should mean that I get referred for tests or to see someone!
I finally got a MRI, albeit lumbar only after fighting for 4 years for another. I had to chase the appointment with the MSK doctor many times to even get to see him. He eventually saw me after over a year of chasing the appointment even though it was supposed to be an appointment for 4 weeks later, but was over a year instead…
He referred me for an MRI as he saw I was bad. Shame only lumbar as I have issues elsewhere too.
No idea for the results get as I never got them and had to chase them too! Took me chasing 3 times to get an appointment near the end of this month for the results although I think they must be normal.
Sadly we sometimes want things to show as least then there is a cause!
I have no idea why I have my chronic pain, chronic fatigue, sciatica or any of my issues.
They never test or diagnose for decades. Took me over 25 years to be told chronic fatigue and waited 20 years for the chronic pain diagnosis.
I have positive autoimmune tests, a perforated septum and no idea why as no one tests or refers me to anyone.
The same with the chronic fatigue. I have never seen anyone and I have had it over 25 years.
Once the MRI comes back that will be about it for then doing anything about my back. They won’t MRI it all and if it comes back ok then they won’t try to investigate what exactly my chronic pain is, as with all the issues and blood test results, it must be something other than just “chronic pain” which is what I have been diagnosed with.
PIP (Disability Benefit)
I have to renew my PIP now. Got a letter and took 2 weeks to fill it out and get evidence as it is just so hard to do and being disabled, I have to do this every few years! Posted it recorded but the tracking didn’t ever update. I was in tears at the thought of doing it all again.
I called PIP and waited an hour in the queue which happens every call. They said they got the form even though the tracking never updated as delivered! PHEW!
Tracking still showing as not delivered so I really hope he was looking at the right form when he said he got it back! Hopefully they award more this time as I can’t live on just over £300 pip a month which is all I have to live on!!
I desperately need more plus I should get more as I am housebound and don’t do anything other than sit in my chair or lie in bed everyday as I just can’t do anything.
I am still crowdfunding for my painkillers for severe chronic pain. I run out end of this month (October). Please help if you can!
I only get my pip which is just over £300 a month total. Can’t work, am housebound and can’t get ESA or UC as mentioned in my FAQ. I don’t get anymore money and it costs more than I get a month to live!
My medications for chronic pain total £206, some NHS some not on the NHS.
I desperately need help with this or I won’t have my medical cannabis which has been amazing.
You can donate from anywhere in the world and any amount helps!
JustGiving page has so much information and photos too, including bills for proof of cost.