Well my Rheumatology at the hospital was a waste of time and pretty dreadful!
As you may know I have chronic pain and chronic fatigue, both of which got much worse in the last 3 years to the point I was bedbound without the strongest pain medication.
It dramatically got worse very quickly.
The fact they got worse plus the positive autoimmune results can point at numerous conditions, many of which need treatment like medication to manage.
I have 4 positive autoimmune results from the other month:
ANA Result Positive
Parietal cell autoantibody level – Positive (Due to Mitochondrial Ab)
Antimitochondrial autoantibody level – Positive at 1/100
Scl 70 antibody level 3.30 AI [< 2.48]
I went to Rheumatology and the doctor just spoke about one of my blood tests, Scl 70, which is related to Scleroderma and looked for red marks on my hands and legs and that was it!!
I mentioned the other tests and possible conditions and he just said “it can be many conditions but you don’t have signs for Scleroderma right now but I will see you again in 6 months”.
No matter what I said he said that over and over again.
He said nothing about the other positive tests, which along with the Scl 70 can mean things like lupus, Sjögren syndrome, rheumatoid arthritis, Spondyloarthritis and others.
He made me list my medication even though it was on screen and he had a list of conditions he must have written down on paper, as at one point he assumed I had IBD and I said no and he crossed it off. No idea why he had written that down.
He checked my skin for red dots, he checked my legs bad made inappropriate comments about my legs being nice after I apologised as I hadn’t shaved them this week with things like “they are nice legs”, “I have to be careful or I will get into trouble”, “you will slap me or hit me with your stick” etc, throughout the entire visit.
He also didn’t cover his nose with the mask during the lockdown of the corona pandemic.
He didn’t do anything but talk about Scleroderma and how my skin is ok even though you don’t have to have skin issues to have the other type of Scleroderma. It can affect your organs only. He only said “your skin looks ok” over and over again no matter what I said.
He spoke about the MRI and previous Rheumatology I had for a completely different issue which I don’t have anymore which was many years before the chronic pain got bad.
He mentioned medication I haven’t even been on when speaking about dry mouth which can be a symptom. He said it could be gabapentin or pregabalin. I have never been on pregabalin and I had gabapentin almost 3 years ago now. That would hardly be causing dry mouth now!
Honestly was a waste of time. I have numerous positive auto immune positive blood test results and my health is much worse the last 3 years and he just looked for red marks for Scleroderma and that was it. He didn’t listen to me at all.
I was wishing this appointment would lead to some more tests or something to find out what is wrong although from never having any medical appointment that was good, I had a feeling it would be rubbish but I never expected as bad as this.
I have to go back in 6 months for him to look for red marks again..