Hi everyone, so I am back from seeing my GP and it went just how I thought it would,, she didn't listen to a word I said. She basically looked over the report of the pompous ass that seen me at the eye clinic that wouldn't perform the biopsy that was recommended by 3 other doctors, seen my ESR and CRP were normal and that was that. I told her that I have done research and have spoke with people who are confirmed cases of either GCA or PMR and that it is possible to have normal blood markers, and she it very defensive and said no absolutely not. Didn't listen to my symptoms which I still have the extreme fatigue, night sweats, still tender scalp on right side not as bad since on the prednisone, still blurry vision, sore neck and shoulders, and hips, a headache not terrible but just doesn't seem to go away that is at the right side and base of my skull. These symptoms I never had before I know they are not my Fibro. I see my Rheumy on Thursday hopefully she will actually listen. I am feeling see angry and feel like they feel I am making things up for some stupid reason, like I enjoy sitting in doctor's offices and having blood test,s, and my eyes prodded. They were the ones the mentioned these diseases to me, I never even heard of them until July 29th.
So angry 😁: Hi everyone, so I am back from seeing... - PMRGCAuk
So angry 😁
The "treatment" you are getting is appalling. Unless they can definitely prove that you do not have GCA with your symptoms they should treat you as though you do. If you were presenting with heart pains, or a broken leg, or slurred speech and partial paralysis, they'd be giving you priority care. Is there no one you can contact who can take up your cause? I think for starters I'd be calling my local CBC station.
Have you seen the talk by Dr Dasgupta posted by Kate Gilbert earlier? Brand new guidelines by the PMR/GCA world experts.
healthunlocked.com/pmrgcauk...
No I will watch the link you sent. 😊 I am correct I did see here that you can be 50 years old, and have normal ESR and CRP and still have either one GCA or PMR? Or am I going bonkers? I am feeling like this is shades of my cancer diagnoses were I was first told I was probably peri menopausal , then then long haul to finally get diagnosed with fibro. This is just so exhausting fighting for yourself.
Oh misaryk,
What a dreadful day for you. No, you are not going bonkers, as we all know.
Try and calm yourself down before you see your Rheumy, so that you can explain your symptoms rationally, hopefully he/she will be more professional and listen to you.
Make a few notes about your symptoms, and if you can take someone with you to 'listen' for you, and intercede on your behalf if necessary.
Do hope you get some sensible advice at next appointment.
Thank you for confirming that. Lol DorsetLady 😊 I am just feeling so unheard by the medical profession like a small insignificant little voice falling on deaf ears.i am so thankful for finding this site. Like I said they are the one's that suggested these diseases in the first place., I am not coming up with these on my own.
I know - been there, unfortunately. But I do find that being a stroppy, bloody minded woman has got me through many a rough patch. One of my bosses at work many years ago said 'I don't suffer fools gladly ' and he was right. That sometimes includes those who may think I'm just a simple country lass who doesn't know anything!
I fully intend to go down fighting! lol
misaryk,
I am appalled by your GP's reaction. Do not let this doctor batter you. You need another opinion. Glad you have an appt. with your rheumy! Go forward, write down your symptoms and story. Visualize yourself being heard and respected as a person who needs to know what s happening to her body,
Blessings and courage to you.
Correction! Come up fighting! Good luck!
I was going to recommend Dr Dasgupta's heartening lecture too. It gave me hope for the future. He says that symptoms such as yours should be treated as a medical emergency, like a stroke. No wonder you are angry! I really cannot understand this attitude in some of the medical profession. What on earth do we have to gain by faking these horrible diseases? They are altogether too dependent on test results, there is much more to human conditions than can be seen under a microscope. I suspect there is pressure to save money too ( on expensive procedures etc.)
Dr Dasgupta's talked about an ultra sound test for GCA, just an instrument placed at your temple picking up inflammation. I think we should all have this routinely if we have a PMR diagnosis, given that the consequences of a missed GCA diagnosis are catastrophic and the disease in on the same spectrum .
Good luck with your audition Mysaryk for the rubbish Oscar of GCA. Take care!
I sympathise I have the same problem I am of the opinion my doctors are so afraid of being blamed for anything they will not take ownership of anything . I had 40 mg prescribed pred instead of 8mg in error .He just ignored me when I told him even though I showed him the packet .Changed the subject and wouldn't engage . That being said I was in awful pain ect and thought I was having a flare up ,doctor prescribed 8mg (gave me 40)! my markers were ok but didn't consider anything else to be a cause . When I saw the rheumy this week on routine appt she said My bloods were ok but as I have osteo athritis and other stuff going on .It could have been that . The GP s find it easier now to say ''tell the Rheumatologist when you see them '' They make me feel like a hypochonriac too .Its infuriating but as I have never visited doctors at all until the last 8 years .I get angry .I keep saying I will change my Doctors but you could be in the same boat with new ones . We do have on excellent one but 8 weeks for an appt ? sigh .Try not to get angry stress wont help .Think to yourself it is up to them to tell you what is wrong not for you to guess .They dismiss us with arrogance and in my case I had this untreated for over a year because they had no idea . You can imagine the imagination running riot as I became more and more immobile and in pain still working trying to convince the doctor that the ever increasing painkiller did not work . You have a Rheumy to see tell them you fears I find them more helpful than the doctors and they have after all specialised so they are more interested .That helps too .Good luck let us know how it goes .
Change your GP practice and talk to people around you and see what they think of their GPs. Deprive them of the money they get paid by removing yourself from their books. Then once done, write to the Practice Manger and tell them exactly why you have left.
Print that liast post you wrote, and take it with you and just say, 'Please read this before we start the consultation" with a smile on your face.
Take someone with you when you see the Rheumatologist, preferable a strong woman, if not a man.
Well..I'm done with female doctors. I've tried them over the years and am usually disappointed because they do not listen. I now have a male doctor who is wonderful! It's like night and day! See...guys like to SOLVE problems...women like to LISTEN to problems...big difference, in my humble opinion. I'll never see another female doctor again. Oh..and I'm a female.
I am getting to that point, I did have a great male doctor but he moved away, so I thought I would try a woman doctor.
Yes..I know the feeling. I've tried female doctors here and there and just haven't found any who were that helpful. Good luck...there's got to be some guys out there who have ears!
I've had bad experiences with women too - although I currently have a few wonderful ones. None of them English-speaking strangely...
But whether it is a male or female being un-hearing, taking someone with you, especially a male partner, seems to concentrate their minds greatly.
Misaryk,
I just wanted to say I'm so sorry you have been treated badly by your medical profession, but you are certainly not alone. I'm in Canada and have been treated so badly I had to look after my GCA by myself for several months, during flares, during tapering,.....My GP is useless so I found a rheumy by myself and finally have some direction, but even this one is not the best, but it's the best I could do while feeling so ill.
I wish you all the best and hope your situation improves and that you feel better soon.
Cheers
Thank you so much for the kind words. It is sad when it seems like you have to research things for yourself and can't always feel comfortable that your health is being taken seriously. I hope you have better luck! Tomorrow I see my rheumatologist which so far hasn't let me down and seems to care. Take it easy😊
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