Absolutely ridiculous…I usually don’t Advise anyone of anything, just make suggestions, but I would fire my rheumatologist immediately. Next time, interview your rheumatologist! I interview all my healthcare providers. I wouldn’t choose a pediatrician without an interview, so why choose a specialist without one. My rheumatologist has no bedside manner…he is very straightforward and to the point. If I whine I have been in pain, he throws it back at me… Why didn’t you call me? Med not working…you have to let me know! I totally trust my rheumatologist, and if you can’t say that, you need to find a new one. This is your disease. You need to research, make yourself knowledgeable, and say: this isn’t working for me, so what is next? Do your homework. Keep a journal. Research!!! I cannot express this enough. There are things you will never know are related unless you have a proactive rheumatologist. I have had to fight my insurance company 7 times in last 2 years on copays. It is difficult when you are suffering, but believe it or not, focusing on these things help take the focus off the constant pain.
I am sorry, I live in USA, and I have coverage through my work with co-pays, so perhaps I have options others don’t have? I am limited to my network unless I want astronomical co-pays, but I still have options. I forget others may not have options.
In the UK @kwtawalker the NHS does allow us get second opinions and within reason be treated by any doctor in the country. So we do have options. But we have to persuade our GP to access these options for us. Or rather we research who and we then have to persuade the GP to refer us. And we can report ineptitude and complain about it etc. etc. Whilst the NHS does seriously struggle for cogent misfunding and underfunding reasons, it is still rather amazing and even wonderful. I work and so pay tax, so obviously some of that tax funds the NHS, but the NHS is free. All prescriptions of biologics are free to the patient and even delivered to one’s home free, prescribed other drugs and painkillers are subject to a charge of just £8 odd. Accessing a rheumy through a referral by your GP is free.
Incidentally I love your relationship with your rheumy and so agree that sort of relationship is the only way to go in treating this complex disease. Some us just have the knack of self advocacy and some of us really have to learn how do it. And again with this disease, we simply have advocate for ourselves at the end of the day
I, too, am lucky to be a government employee, so I have amazing insurance…I just have to Appeal a lot…lol, I always win. I am on Biologics, so they are over the top expensive here…approx $5000 a month. I rarely went to a doctor until a couple of years ago, but I have had the same PCP for over 20 years. I always say this: I wouldn’t go to a plumber for a well issue, so why see my MD if I need specialized care? While I don’t need a referral, my Insurance requires communication…So I always get one. I have an issue going on now that has caused a pissing match between my MD and Rheumatologist, to my detriment. Seriously, like I need This?
I’ve been silent in here since earlier this year. Following the advice I got on here I phoned the hospital in February and booked my appt myself with the guy I saw privately in June 2018. Next appt was in May so a bit of a wait but hey after 2 years what’s 3 months!!
Had my appt on 22 May and I finally got diagnosed!!! He said the fact they couldn’t see inflammation was outweighed my the other symptoms, psoriasis, hlab27, strong family history of auto immune disease and the fact the anti inflammatories and the steroid injection helped. So I now have a support line, they’ve increased my sulfasalazine and I’ve “officially” got psa diagnosed in the NHS.
Wanted to say a big thank you to everyone on here for listening, sharing their own story and encouraging me to question everything xxxx
Well done Lulu!
Will you be staying with this rheumatologist?
Yes very well done @Lulu and I hope you’re able to access this rheumy from now on on the NHS.
That’s great news! Being diagnosed gives you access to proper treatment, so it’s definitely a good thing.
It takes so long but once you are told what you have known for years and can give it a name the relief is enormous.
On my second visit to my consultant she did go down in my expectations a little though. Did ‘well you are 53 and must expect wear and tear pain’. Hmm. Hope you have good experiences from now yourself.
Def get another doc if possible. You don t need this. Regards