Well he's done it again! Went to my GP for a prescription for medication which the rheumatologist was going to ask them to prescribe, only to find out that after two months they had heard nothing. GP found a letter on the hospital website which should have been sent but hadn't, and there was no mention of any medication on it. I told the GP what was discussed and got the cheaper alternative to the one spoken about.
At the hospital appointment I actually saw the man himself. My left ankle was swollen so he listened to my chest and told the two students that were there that there was no sign of CCF apart from the swollen ankle. He said that the two raised beta2glycoproteins were of no significance and he wasn't going to do anything about that. I told him I had had vasculitis again and he asked if had taken a picture. I said no as I had shown him pictures last October of last summers episodes, he said he had not recorded that.
So... My feet were swollen the first time I saw him 18 months ago and I showed him then, and they have been a problem for years.
At the first appointment he was going to refer me for physio on my neck but never did.
He has put off prescribing medication for 18 months and hasn't even mentioned it in the letter that hasn't even been sent th the GP, if that makes sense.
Now, out of the blue, I get an appointment for an ECG which was never mentioned either at the appointment or in the letter that has never arrived!!!
Sorry for the rant, but I have had enough.
Hope no one else has to go through this.
Lorac x
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Sounds terrible. We (my daughter actually) was with a really bad Rhuemy dept and had no faith at all in her consultant, so we got transferred to one of the Lupus UK Centres of Excellence which is a million times better. Bit further to travel but really worth it. Might be worth getting transferred.
Hi yakamalayo. I'm afraid it is not possible for me to get to a centre of excellence as they are too far away. My first step is to cancel the ecg and try to find out exactly what is going on. My next appointment with the rheumatologist is in June so if I cant find out anything from the gp then I will sort it out with him. But then there is no guarantee I will see him, is there?
That really is unacceptable Lorac! You should phone you consultant's secretary and explain the situation and ask for all info regarding your appointment to be forwarded to your GP and a copy to yourself.
Hi Bronagh I am due at the hospital soon so will see what he has to say. I will cancel the ecg as I am not going to agree to something that I have no knowledge of. Hopefully that will make him realise that he can't do things like that, and that he should discuss treatment with the patient.
Oh Lorac are you sure about cancelling the ECG? This is an important heart test, I have one done every year, I think it is standard procedure for those with our conditions. Be careful not to cut off your nose to spite your face.
I understand what you're saying Bronagh, perhaps I should have added that I would make it for a later date once I had found out why I am being sent for it. If it is necessary then I will have it, but as yet I don't know the reason for it. I have never had one before, nor had it mentioned, so I don't know if its routine or advisable, hence the need for these things to be discussed.
I think you need a new Rheumy!. Yours sounds an utter nightmare with his attitude and the way he works!. Good luck with chasing letters. I've had to do this over the years and usually the secretaries are very good. X
Hi Misty. I am beginning to think the same now. I will see how things go when I see the rheumy at the beginning of June then it may be a trip to the gp for a referral to another one. After I see the gp next week I might be chasing up letters too, if they haven't come or she won't give me a copy.
You have a good plan . Good luck for seeing the Rheumy beginning of June and your GP next week. Hope you get those important letters, we shouldn't have to do their job for them!. Do have the ECG , it's important. One of my Rheumy Consultants liked having one done yearly just to keep an eye on things!. Keep us posted.X
Hello Lorac, Although very clearly your consultant is several sandwiches short of a picnic, the ECG is probably a good thing as swollen ankles can be a sign of an underlying heart problem, - Lupus related or not. Obviously he should have had the manners and intelligence to discuss this not unimportant thought with you, but this seems to be fairly common now. Patients cease to be "people" just charts to look at - sometimes. If you can change to someone with a high IQ, then do, but don't risk going under radar - you have to be able to "play" the game, and it is a game under NHS now. Your anger is very understandable, use it for your benefit, not against it. Good luck
Thank you I intend to. I am only cancelling it until I have kicked up a fuss then will rebook it. It just seems odd to say the least that I showed him my feet and ankles nearly two years ago when I struggled to get my shoes on, and told him they had been like that off and on for years, and he said nothing.
Lorac
Try and take photos on tablet or phone and present them to the doc during your appointment?....This illness is so contrary and at least the evidence will be there..I think that one link person to co- ordinate meds, answer our queries would help...maybe the rheumatic nurse ? I initially had the same issues at gp's and had to wait till it got fixed out..very frustrating and confusing.
Have done that too lupilu, when I had vasculitis, and shown the dermatologist. Neither of them documented it and dismissed it. Evidence of the last time is still on my leg, a discoloured area where the muscle has wasted away-it looks awful, but even that does not appear to be enough.
Lorac1, unfortunately this seems to happen far too often. I try to not let it upset me. D E E P breath, in and O U T. I finally got tired of being angry.
A very apt name, fighting, which appears to be what we have to do. Some more than others. I wish all the best in the world to those that have to do this continually and hope one day they get answers.
I came up with Fighting when the site wouldn't let me use the name of one of my previous pets, Heidi. Maybe I will keep the name. Someone told me later they likely would let me use Heidi if I put a number after it.
I don't know the system you're dealing with in the UK, as I'm in the U.S.. However, our family suffered misdiagnosis and malpractice, one episode lrad to my husband's death. So, I fight to see a competent specialist whenever possible. One time, covered with Lupus discoids , ANA of 1:640, and other huge signs--I went to the rheumatologist only to be told "it's not Lupus" (no explanation what it was !). I got an appointment at the nearest university hospital, where the entire rheumatology staff overruled him and prescribed aggresive therapy ASAP! Can you get any appointment with another rheumatologist? Also, when you mentioned a muscle withering, it made me think of people who get a "muscle attack" in the same way one gets a "heart attack." It's not commonly known, but the blood vessels to any muscle can get blocked just like those to the heart, killing the muscle--even in an arm, leg, etc. If you have any history of heart disease or clotting, perhaps a vascular specialist or heart doctor could help? (Bringing pictures if needed). A vascular specialist could look for vasculitis? Just remembering more than one way to skin a cat...There are many simple blood tests for inflamation: ESR, c- reactive protein, and ones specific to muscles.
Please hang in there, and let us know ? Your in my prayers (if you don't mind).
Hi Anne and thank you for your reply. I was sorry to hear of your loss and your continuing fight. I moved to Wales a couple of years ago after being diagnosed in England and this rheumatologist appears to be questioning the diagnosis. Even though he has seen pictures,seen my leg, seen positive blood results, because ana's and dsdna's are negative he doubts lupus. He also discounts Hughes even though beta2glycoproteins are still positive. I had some bloods taken in readiness for my appointment in June so we will see what they are, and am going to sort out the mysterious ecg too. The first stop os my GP next week and see if the letter has arrived at last amd what she knows.
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No blood tests
Atos appointment - advice please
