semi update

[Brychni]

Hello all - hope you are all doing well, I dip in and out of the forum but trying not to get too involved until I have a better picture of my situation. My MSUS scans are next week on Wednesday and I will update then about procedure and cost etc.

In the meantime, I thought I would let you all know that I took the step of 'complaining' to the local health board and instead of emailing I managed to speak to a real person. I explained that I didn't really know what I expected the outcome to be but that I felt I had been treated irresponsibly and misled. In fact when I was telling the tale it sounded quite awful. If it's true that I was put on MTX during a pandemic lockdown where I had to have blood tests every 2 weeks, on the whim of a rheumatology nurse, without an appointment, online or otherwise with a consultant, I think that's pretty bad. Especially now when it was my increasing symptoms that led to being put on it and those very same symptoms are now the reason given for being taken off it.

Amazingly, he called back within about 20 minutes to tell me that I would be receiving a call from rheumatology and when I got home yesterday afternoon the NHS rheum. consultant who diagnosed me had left a message saying she would offer clarification and that she would also arrange a second opinion with the other consultant who I now know is the one who carried out my original scans March 2020.

I haven't called back because the scans she had said would monitor my condition are not available because of covid - so there is little point in me going to see someone in the same department who carries out those scans normally.

Anyway - wanted to let you all know that it is worth speaking up if you feel you haven't been treated properly. To be clear, I know that rheumatoid conditions are difficult to pin down and treat and that is not my complaint. My complaint is that all I ever wanted was physio but even without classic symptoms of inflammatory arthritis, because of scan results on wrists I was told I had Undifferentiated Inflammatory arthritis and had to take drugs to stop it from developing further. When I asked about bloods and how it would be monitored I was told early on that the scan results were irrefutable and blood tests meant nothing in the face of the evidence.

I was told symptoms may continue to develop as DMARDS take a long time to work, I was also told they are not pain killers. Every time I reported new symptoms or painful episodes I was told by the nurse that this was 'normal' even though it might feel like I'm going nuts with pains popping up all over the place. Because of this MTX was added.

Short version: At my next appointment with the consultant which I had to battle for, I was told that all of the above symptoms were evidence of mechanical issues and it was agreed that I could stop all medication, with no examination, no questions about symptoms and no explanation of how she could possibly know this without scans - she even had to look at my notes to remind herself what my diagnosis had been.

As far as pain and symptoms are concerned, to date some things have crept back and my elbows are and have been permanently in pain for a couple of months now. Shoulders bad too and lots of other bits, some of it quite nasty but I'm managing with pain killers and physio.

things that have crept back:

bowel issues - diaorrhea mainly, bloating and cramps

unexplained bruising and the weird painful lumps mainly around knees and on thighs

silent reflux thing, got a nice 'little' cough which always raises eyebrows

the pain in front of ear/jaw angle thing

right index and middle fingers, often puffy/swollen

New things: nose bleeds! It happened three days on the trot a week ago. was lying in bed, felt a pressure in nose, got up and husband pointing at me saying my nose was bleeding. Managed to get it under control but started again after bending down to get into the car on the way to the beach and wouldn't stop - had to pull over and puke a load of blood in a layby. Nice. Keeping my fingers crossed that it doesn't happen again.

the arse pain thing - happening a lot more now. I know now it's called proctalgia fugax. It's benign but horrible, horrible, horrible.

Good news: migraines seem to be disappearing! I'm absolutely certain it's hormonal. I think I am going to be one of those people who just suddenly stop having periods and had it not been for the HRT experiment from the migraine clinic I probably wouldn't have had that awful bleed. Anyway, periods gone, migraines gone. If it's true, this will be a massively positive change for me as migraines and cluster headaches have ruled my life for decades. Sadly, at my age it won't make any practical difference now but having a clear head is so refreshing.

The antiphospholipid thing: new consultant said not to worry! Yay, have struck it off my list.

[medway-lady]

WOW what a dreadful time you've had and really its shocking to read. I can only hope and pray things get better for you and being mucked about for want of a better expression stops now. RA is a difficult condition to manage we all know that but did you not have other tests like Celiac ? Pernicious Anaemia, and has anyone looked at your nose as well. I only ask as had a nasal pylop removed a few years ago that caused me a few nose bleeds and I think if I were you I would ask exactly what tests have you had, because I had a lot pANCA, Celiac, PE, and was already on thyroxine for Hashimoto's disease. After all its just a few blood samples and it will give you as well as the professional a clear idea of what is happening overall. Good luck xx

[springcross]

Good for you for speaking up Brychni. If more people did then maybe something would be done and others like you wouldn't just be palmed off. Good luck with your scans next week and I hope that you will soon be given a clear picture of what's going on and an accurate diagnosis and treatment. xx