Hi :)
Well I had my annual trip to my rheumy yesterday after work. I had to wait for ages before seeing him. There were a lot of people waiting. I've never seen his clinic so busy.
Eventually I was called, asked if it was OK that 2 students sat in (no problem) and the 'consultation began'. He asked about thyroxine and told the students that SjS often affected the thyroid. (He's never told me that - I thought they were separate conditions) He then asked me how much Plaquenil I was taking. (He's the one who dictates the dose) I told him and said I'd wondered if it had anything to do with tinnitus I've developed - and further hearing loss) "Oh no!" he said "Nothing to do with Plaquenil that! Plaquenil doesn't cause tinnitus."
"Why is it listed as a possible side effect in the leaflet that comes with the box then?" I asked sweetly. The students smiled. " Never heard of it." said Rheumy.
I told him I'd seen an ENT doc and that he'd found a 6mm lymph node inside one parotid but that he was keeping an eye on it. No comment.
I was then marched through to have my chest sounded (well - my back) and he moved both arms around. He also noticed my blance wasn't great. I told him I'd seen a neuro, who said nothing was wrong. "Which one?" he asked. I told him. "Oh him" he said disparagingly. End of conversation.
I had several questions but had a real job to get hiom to listen.
Well everything seems fine, he beamed. This lady had no Ro showing up in her blood tests - he said to the students - so she is never likely to have any glandular involvement. Her sjogren's is pretty mild. (I don't have swollen glands but what is the 6mm lymph node doing? I realsie that's small - and will hopefully stay that way.I don't think he heard me) I thought about all the folk in here who are sero negative.
"Fine then Mrs R - see you in 12 months time!"
As I was practically bundled out the door I managed to tell him I'd read a lot about Vitamin D and autoimmune diseases. His face lit up and he said "Oh - there's a lot of research going on. In fact some people even think that a lack of Vit D may start the AI process" Well sjoggies don't tend to get a lot of sun I said - cos it hurts. "I know!" he said "we could test yours!"
Then I was out of the door and sent to phlebotomy.
The whole things was rushed from beginning to end. I've never had such a rushed appointment. He must only have ordered a test for Vit D because they only took one vial of blood. Usually I get the whole ANA panel done annually. Maybe as I'm 'mild' this is not necessary.
I was pretty tired when I got home and just felt deflated. I don't want hours with the guy - not even half an hour but I'd like to be able to go through 12 months of symptoms (most being the same so it wouldn't take that long)
Next year I'll go with no expectations!
Take care - Scottie :)
What a bummer. I feel the same way every time I go to mine and wonder why I am going. Hang in there. Hugs! :o
Oh Scottie,
That is so disappointing for you, you must have felt awful. I wonder what his students thought...
I wonder if he was so busy being the "BIG MAN" for the lowly students he wasn't concentrating on you and your care...
Leah xx
I agree with Leah's obersvation, too busy being a big shot. Had this happen to me before w/ the student's in the room.
Sometime's it works to your advantage b/c they want to do everything by the book and show the students how involved they are, and other time's I've had yourtype of experience happen, one time a very pretty female intern was *really* distracting the endo I was seeing, it would have been comical had I not had to wait 4 months to get in! LOL
So sorry to hear about what you had to go through Scottie. Sounds like the neuro I had to go see 2 times. It is so frustrating and they can make you feel so stupid about things. Luckily we know that we are not stupid and that yes indeed something is going on in our body, we just don't know for sure what. Would you have to go to the same rheumy next time?
Keep your head up and hang in there!
Hugs and blessings,
Leslie
Such a shame Scottie..
It's seemed a lot of waste of your time and effort no wonder you got home flagged out!
This happens a lot when one finally makes ones mind up to go see their Doc about something, only to get this same treatment. One comes home feeling so deflated and so humilitated.. tomorrow may be different!!
Dolly
Hi Scottie
I wonder what it would take to get a doctor to understand what it means to be a 'patient' patient. Surely some of them must be in that position once in their lives, and then are changed by the experience?
To wait a year and that's all you get ... frustrating isn't the word! I wonder whether it would be worth writing to him with a list of symptoms, explaining that you want it included in your file so that it's brought up to date. (Sub text - things he didn't bother listening to.) Then you could follow that with the questions you didn't get a chance to ask him. You could say that you realised how busy his clinic was - as if that was why he didn't bother giviing you more than 5 minutes! - so you're happy to have answers in writing instead.
If this doesn't work then I'd be tempted to ask for another appointment asap, and possibly with a different rheumy.
Take care - Chickpea
Hi Scottie
I can so understand your anger - we wait ages for these appointments only to be made to feel we should be eternally grateful to be graced by their presence alone!! I love Chickpea's suggestion, I'm going to remember this in case I need it in future. I'm quite lucky with my rheumy, she is quite on the ball and happy to listen. There's also a clinician attached to the unit who is fabulous and will listen for hours - is there one where you go to, you may get more out of an appointment with them if there is.
Wen x
Sorry you had a bad appointment - and that is with an official diagnosis!!! I dont understand how all the appointment system with the GP/hospital works so cant offer any advice, but wanted to say I feel for you.
x
Poor Scottie,
I think everyone has said it all but I will repeat the general consensus - you wait for a whole year and it is reasonable to expect a more thorough check up and some personal attention. Surely they should have done all the usuals like blood, blood pressure, urine and weight. Let's face it, once a year is barely enough for these tests. Go with Chickpea's advice - it's got to be worth it.
Beverley
I didn't know that about the thyroid either.At least you heard one bit of news,by accident.I'm considered mild too but I feel like crap more times then not.Why 12mos.?I'm seen 4to 6mos. even by my previous not very good Rheumy.I know we're only one of many passing through in a day but don't they get how we live with an illness and it's very important to us to hear any information they can possibly pass on to make our days have the best quality we can.Grr I'm ticked off for you.
Ruby
Thanks everyone! :)
I might just write to him. I think since I saw him last year I've been dxd withj irritable bladder and I don't think he took in that there is something (even though little) going on with one parotid. Also a cough that he dismiissed last year turned out be be caused by acid reflux. If he'd worked it out then I might not have had the cough for nearly as long as it went on for. The GP figured it out eventually.
Anyway - thanks for the support as ever! :)
Take care - Scottie :)
Scottie
I just want to kick that man in the pants. I wonder what his student's thought of his 'bedside manner'. Maybe he is just as short with them - obviously his time is too precious to spend it 'doctoring'.
I don't have that problem - I actually dont have any rheummie contact. and haven't had since my diagnosis almost 2 years ago. However, if things get really bad, I will put pressure on to see one, not necessarily the one who diagnosed me though!
Keep our chin up.
Kathyx
Scottie,
Shame on you, do you realize how much each of your questions cost? That's one more patient that could have been rushed through the office, oh wait, I think I hear something, chaching, chaching, oh it's OK two more are waiting in examining rooms.
Do you know that a doctor recently told me that the hospital does not want the doctors to talk to drug company reps because it takes away from the bottom line, that's one more customer that he could have collected a fee from. He told me that he see reps anyway so he can get as many free samples as he can, because some of his patients on fixed incomes can't afford to buy their meds.
He also told me that he got a call from another hospital who needed his help to save a man from bleeding to death, but not until he filled out forms explaining why he left the office before he saw his last two patients, that bottom line.
Lol Epson! ;D
Our docs don't get paid 'by the patient' though - they're salaried. :)
No Scottie, but the clinic does and they have to justify paying the staff, read what I added to my last post.
Scottie, I hear you loud and clear. I'm sorry this was less than a productive appointment. It is frustrating and can leave a person feeling like nothing more than a number or that the doctor is kind of looking over your head at something else. Invisible...that's the word! I see a rheumy at a teaching hospital and I mainly see the fellows (pre-rheumy or whatever specialty) and then after the fellow has done the exam and asked questions the real rheumy comes in. The fellows, because they're learning, do seem to take a bit more time with you. However, they have to defer to the specialist. At my last appointment you could tell the fellow actually disagreed with what the rheumy was saying. He voiced this, but the rheumy absolutely did not listen. He already had his mind made up. Why do they have such a hard time believing something that a patient has researched and dismiss it as false? Like the issue about tinnitus!
Most of the time I feel like giving up. I've been diagnosed, but I still don't feel like I'm getting anywhere. You wait for months for your appointments. It takes time and energy to get to the appointment, etc. and you're left feeling like you wonder why you bothered. I hear ya Scottie!
Terri
Terri
Almost a waste of time Scottie. Wonder if there are any Rheumys with Sjogren's out there. Roxanne
Scottie,
It almost sounds like you are invisible and only a specimen for your Rheumy to show the students. :(
What's the doctors phone number? I'll call him and tell him "hey buddy . . . you don't treat our Scottie like that!!". I'm sure he will be remorseful and have you return to his office free of charge. ;D I wish it was that simple.
Is this the only Rheumy you've been seeing? If he's in a "group", maybe you could see someone else.
Hugs,
Bucky
Scottie-
This is one area where I feel myself very lucky. I may wait in my rheumy's office for an hour and a half, but when my time comes, if I need 45 minutes, I get 45 minutes. I know for a fact that I was in there at least that long at my May visit. And i see my Rheumie every 3-4 months. My gripe is that it can take a week or more to get an answer to a problem phoned in.
But that's why I have the family doc I do. She's not afraid to step up to the plate when I can get hold of my rheumie and do what she can to hold me over til we get guidance from him, if neccessary. I did have a backup rheumy was closer to home, about 45min., but after 4-5 visits where he asked, "What is Dr. V doing? Oh, ok" and that was the end of the visit, I stopped going.
I just fired the orthopedic doctor I was seeing for my knee (who did the scope back in Feb). I got tired of him never coming closer that the door frame to the exam room while his students and PA did all the work. I never got answers to questions like, why after all this time is my knee still swollen? So, I just sent a letter asking for my records. His ego was SO big, it didn't even fit in the door frame - not my kind of doctor.
I hope you do write your letter and that the jerk realizes he should have taken the time to listen to your concerns while you were there in the office. Also, I'd make sure the other doctors you see for issues that are most likely related to your Sjs, especially the parotid gland issue and your gastro issues, send him reports from your visits. That way, you'll at least know that the jerk knows all that's going on with you.
Are you stuck with him or can you request someone else?
Good luck with the letter, I hope it gives him a kick in the pants to remind him that he's there to take care of patients, not show off for students,
Tracy
Scottie, sorry too about your bad visit. I think the writing to him would be a great idea. It would maybe open his eyes a bit and definetely make you feel better too to vent. I did have an incident with my daughters pediatrian when she was 4 at a checkup. I sent a long letter back telling my dissappointment. Then one of the babies bomped her head and I had to see him the day he happened to get and read the letter. He totally appologized and felt quite bad but our relationship was super after that and he trusted my "mom" judgement a lot more. I also just switched to a new Rheumy( due to all of your help) cuz she was terrible at returning my calls. Had my 1st visit 2 wks ago and he was very nice and thorough and I must have a flag in there from my GP referral cuz he was adiment about telling me that he or his nurses would return calls the same day. So maybe if you sent a letter you'd have a big red flag in there- "listen to me please, what I'm here for and asking you is important". Good Luck and Hugs--Net
You should ask him what his dentist does when he has a cavity. Does he wait to fix it because it is not so bad yet? At least it's not a root canal?? If it does not hurt why fix it??? I THINK NOT!
If you have a choice, find someone who will be an investigator into your health and make you feel at peace in their office. You deserve it Scottie. I hope it gets better for you dear.
Kellie
OH I JUST GET FRUASTRTED !!!
Scottie, What is the situation, that you can not change to a doctor who cares. >:(
Bucky can fire up that leer jet and all your sjoggie pals are coming to give our momma looks. :(
I had my 6 mo visit on Monday. If I did not think mine had a very sharp mind, I would change because he comes across as very bored. My husband and I called him Sargent Friday; to clarify that, ; there was a police TV program, years and years ago, that had an investigator officer , who when he was questioning witnesses, he would say, "Just the facts mam, only the facts." very straight and mono tone.
Scottie , yours sounds obnotious and bored. It is sad that he is training as an example to students.
When and if my sjogrens get worse or involved, I will go on a search for a new one. Unless mine steps up to bat when I feel I need some relevant answers.
blessings kimbo
I totally understand what your going through. I just came back from an inernist visit and it was a totally waste of money. Infact I want my co-pay back! I told her about my Sjogrens and she was like well I don't treat any of your symptoms you have to see a rheumie for that. She then proceeded to give me the name of a rheumie but when I went out into the parking lot the number was disconnected. I was really hoping to have my evoxac refilled but she didn't know what that medicine was and refused to dispense it. The only thing she did agree with was that i had a whole lot on my plate but was happy my bp was good and I looked fine. I am so sick and tired of people telling me at least I look good. I feel horrible. My mouth is a desert and so are my eyes. I couldn't even read the HIPAA forms my eyes hurt so bad. Right now I am typing downstairs in my house and my Raynauds is flaring. Sorry to vent but I really wish I met a doctor wih this disease then they would understand what happens when we run out of meds.
Sorry again but needed to vent.
K
Scottie, It is ashame when us as patients or parents know more about the disease then the doctor. Sometimes I wonder how they get there license. Most of the time yo t u have to be the one to tell them whats wrong with you and then they give you the test to prove you wrong and u end up being right(I love that part) Im sorry you had such a bad experience he probably was just showing off in front of his students. Chin up lots of love hugs and kissess Jonnell and Jenna
Hi Scottie
I did write to my Dr when i felt he had not listened and that the consultants had not `bothered' to listen - I explained how I felt my pains and many symptoms and told him no one can feel this bad and not be ill - although he never replied he certainly treats me with the utmost respect now and we have a wonderful relationship - he even told me at my last visit find me a new rheumy and I will refer you.
I have decided also to write to my ENT as i keep seeing the registrar - I will tell him what I think is wrong and ask for the lip biopsy - but only if `he' does it - not his side kicks:)
Go for it - what you got to lose?
Issey
Scottie,
I know this sounds horrible, but I'd wish him to get multiple AIs and have to go to a doctor as bad as himself.
He'd change his tune really quickly!!!
This is the sort of thing that gets us all going, isn't it!? I presume you are in the UK, Scottie....I'm going to make a huge generalisation but it is my experience that male doctors here are still buried in a deeply chauvinist culture which says that you are 'somebody' if you are in medicine. They definitely do not think you have a brain of your own. I think it comes from an old school mentality and an antiquated and ignorant view of the community they are supposed to serve. Recently, I was given a questionnaire to fill in on GPs and usually I don't bother but I thought I would and I did. Trouble is, none of us can afford to get too stressed about all this and we often do that 'letting go' thing but sometimes we do need to stand up for others. From what I have seen of this site so far, you give so much to others so I'm sorry you haven't been cared for yourself in this instance. I too think writing is a good thing to do but I would say that any letter you write should be very positive and almost professional, if you see what I mean. I have written lists in the past and been scoffed at by GPs who have implied it is 'in my head' and the classic, 'you look well enough'... Now, I am thankful I seem to have found a Rheumy who is happy to write quite scathing letters back to them saying that I am not a 'hypochondriac' and that I am 'insightful'!! I think it is so important to have a mutual understanding and respect and I don't think it is unreasonable to ask to see someone else. Honesty is good but no guilt or stress attached! Sorry to go on.....
T
Hi Scottie, boy, ain't that somethin'? Wait forever and get 3-4 minutes, if you're lucky! I used to get that with the last endo and the one I saw for a second opinion, both of them ought to go to "how to treat the patient decently" class, dang. I still can't figure out how they can figure out what is going on if half of the few minutes alloted is spent writing/typing?
I know that rheumy's are hard to come by where you are, but is there any way that you can get to a major medical center? You might have better luck there.
Hi Kimbo, Sgt Friday does describe the rheumy, just the facts ma'am, no ouch's, just yes and no and no deviating whatsoever, and I wonder why I stick with this guy sometimes.
Take care -
Patze
Hi :)
I'd just like to thank everyone again for all their input. I haven't written yet - but as I won't see the guy till next year - I have plenty of time. I may wait until I've seen the ENT guy again. I liked him and he can tell me more about whatever is going on with one parotid gland although, admittedly, physically I'm gloriosly unaware of it yet. No swelling - no pain. I know I'm lucky.
I think when term breaks for the summer I may spend a bit of time composing letters to both the rheumy and the truly horrible neurologist I saw last year. (He was worse than the rheumy)
Anyway - THANKS!
Take care - Scottie :)
Yeah Scottie , I think the letters would serve as good therapy for you, also, to get it off your chest.
Hey Patze, I was determined to loosen up that ole Srg Friday of a Rheumy I talked and ask exactly what I wanted to on my visit and he had to loosen up.
Scottie , what would it take for you to change Docs ? Is it possible ?
kimbo
Scottie
I think Doc's just dont want to know really..unless its life threatening..I reckon they see all these whining patients as the norm.
btw Ive got Tinnitus almost the moment I started on plaq..boy oh boy we need something better than we have now.
Id love to be able to see someone every six months and just unload every symptom and issue..unfortunately Ive found that the docs are not the ones likely interested...as long as you walk in to the office I reckon they think you are not that bad...and anyhow what can they do for us..not much...then they also rationalise that other Doc's will take care of the other symptoms..yet a lot of the time none of the Doc's put their hand up to investigate...we are kinda complicated for them.
Thats my minivent lol...sorry Doc's I know we are high maintenance however..some kind of protocol for systemic AI sufferers should be in place to provide much needed comprehensive care...which by all these accounts from us is currently badly lacking.
Kindandcaring is SO right - we definitely need a system of 'comprehensive care' as she puts it. A system that kicks in as soon as someone turns up at the doctor's with AI symptoms, so that a broad range of blood tests can be done as a first step. Even that basic first step doesn't happen for so many of us.
There is a protocol here in the UK that offers this to possible RA cases, and GPs are encouraged to send people with RA symptoms to rheumies asap, after relevant blood tests. How hard would it be to extend this to others? We also have rheumatology nurses who offer follow-up care to rheumy patients, including phone counselling. But if you're outside the 'norm' of RA you can be lost.
I suppose we just have to keep dreaming!
Chickpea
Hi - The phone counselling goes for people with any kind of heart problem too. Hubby developed angina but a battery of tests can't ascertain why and he hasn't had an episode since being on statins and beta blockers. Any questions though - he has a number he can phone any time.
:)
Quote..some kind of protocol for systemic AI sufferers should be in place to provide much needed comprehensive care...which by all these accounts from us is currently badly lacking.
Amen to that. Even without the bloodwork, it wouldn't kill a doctor to do a comprehensive thorough investigation of our complaints. My neuro was like too bothered as was his nurse practioner to do an exam last time. Just review the meds and bounce me back to the rheumy for major care. Wanted to insist that he check a few things, but no way no how, don't call the shots on them. And as far as writing, keep it to the utmost professional, sprinkled with praise throughout, or may bruise their inflated ego and not be well received. I have tried taking in a typed copy of my recent complaints since last visit and was only given a look like great, thanks, do we have to review all of this. Now I do take in my written list on a small note card and try to hit the major things on it.
Scottie, I sympathize for you. Have been in your situation many times. Most times, I give up and move on to another doc., other times I just try to bear it. There usually aren't any greater prospects around the corner.
Karin
Hi Kimbo,
Yep, I have tried to loosen him up too, still hasn't worked. Dang, and I thought I was crabby these days! ;) ;D
Patze
Hey for those that dont know ;) :D Im a he not a she
Im so glad we all understand how it is....it helps a little..thanks to this forum..otherwise we would be completely on our own thinking these thoughts..going crazy no doubt.
This place helps...especially when all these Doc's think we are all crazy and acting irrationally lol . !
All we really want and need is to be decently cared for...yet it is with sheer frustration that we try writing letters or plead or get pushy..or stamp our feet...
walk in our shoes for a short while and see how the world looks.
I think us talking here highlights it so well..lets face it drug addicts get more counselling and help in many ways than we get...now I believe everyone should get care..um hello what about us though.
For cryin out load if you are suddenly told you have one or multiple Autoimmune Diseases..perhaps progressive, chronic..then you would think that the system could recognise your plight and adjust resources to you accordingly..instead you go home and wonder and worry and hurt...and on and on..
If Counsellors were avaiilable trained in AI's and more coop/coord care ...perhaps if there were more Autoimmune centers..we would feel the care we all surely deserve.
For example my local hospital does not have a specialist Autoimmune clinic..rather it is immunology for all types of many immunological diseases like Aids etc.
We dont seem to get much focus yet.
I hope someone s listening lol..perhaps one day it will change and we will get phone support / counselling and coordinated coop care across all the medical disciplines that we so need.
Its not as if there is only a couple of us..in fact we are among millions and millions