So I have been to see my new rheumy, starting all over again. Asked lots of questions and said he may try me on biosimilar of enbrel. Not sure how this will go as enbrel just stopped working after about a year.
He asked why my diagnosis was changed to PsA and I told him the hisotry of being told if I tried that diagnosis that I could go back to sero neg RA, even though I have never had psoraisis and have no family history of it.
Welllllll he tells me I may have issues now getting access to any more biologics that are for RA due to this. Then to make it worse I get a call from the receptionist an hour later saying that she has my last biologic application for cosentyx from the hospital clinic and they have written on it I suffer from psoriasis and have a family history of it.
To say I was angry is an understatement. I am so furious I may just write to medicare and let them know the registrars lied through their teeth and have jeapordised my treatment now.
Anyway, had a full body bone scan and go back to see him this Thursday to get results and to see where to from here. Hopefully I will get some more info on what else the registrars have written on my forms. grrrrrr
This last 5 years seems to have been all for nothing in some ways. Add to that I now have hyperparathyroidism and keep getting kidney infections. Working full time is becoming a challenge.
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Someonesmother
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No I am in Australia so I am going to have to find out how much it will cost and get them. My new rheumy reception contacted the old one's rooms and they said they had no record of me!!!!!
I know the hospital does, so that is my next step.
Stand your ground & insist your medical notes are adjusted to show the truth.Ask to see your notes & take your time reading them. If you are refused eyeing them........contact PALS....they should help you.
I read my hospital notes & found a simple hysteroscopy had been noted as a hysterectomy. When I brought it to the doctor's notice he asked if I was sure?? Dah?
I said if he performed a scan he would see I have a healthy uterus! He didn't do that, so I then telephoned the secretary of the surgeon who performed the hysteroscopy & had her send a copy of his notes to the doctor who doubted my information.
I wasn't Miss Popularity...but I got my notes "officially" altered.
Yes I am going to have to pay if the hospital won't release them to my new rheumy. They will have the ones from medicare, which is how I found out they said I had psoriasis and a family history of it! They really shouldn't have ditched me and made me cranky, because now I am motivated hehehehe.
They can obviously see that you are a sensible woman and not somebody just whingeing for the sake of it. Slowly and calmly you will get the treatment you need. Keep at it
5 1/2 years of frustration and being subjected to registrars who try and rediagnose you with fibromyalgia without having any of those symptoms, because I have complex issues and it is easier to do that than figure out what is going on. Then ditched by the rheumy I was seeing for no reason being given. I am past frustrated now.
That must be so scary to be set adrift when you KNOW you need treatment. I don't know why some doctors choose rheumatology when they really aren't interested in toiling away waiting for tests & research. It's isn't an exciting or glamorous speciality ....it's not like heart surgery or even joint replacements is it?
You don't suddenly see a patient who can breathe better or walk with a new knee joint, It's just looking & listening (which a lot of doctors don't do) & reading up on what is necessary for each individual person.
I was fortunate enough to still have Medical Insurance when I was diagnosed, plus a friend was doing research on RA drugs, so I got to see the right doctors fast...despite my GP at the time telling me I should "expect aches & pains at my age!" Mid 50's!
However that was 20 years ago so here in UK that might not be so easy any more.
The one I was seeing privately before he just dumped me was alos head of the sept at the hospital. I just have no idea why he decided not to see me any more, no reason just appt cancelled and told he doesn't need to see me becuase I was going to the clinic at the hospital. The reason I started seeing him was because of the complex issues and the bloody registrars who drove me to desperation. Oh well starting all over again.
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Update on appointment with rheumy on Tuesday this week
my first appointment with my rheumatologist..
Hydroxychloroquine effectiveness ?Prodromal RA
Bad time at rheumy appointment
