Rheumatologist appointment went soooo wrong!

Avrielle

I'm on the edge of tears! Stupid emotional rollercoaster!

Just got back from my first rheumatologist appointment and it is clear that the doctor does not have a clue what it is he is talking about!

I first got X-rays on my hands feet and chest which all showed apparently nothing... My hands are fine. My feet are fine. (according to the X-ray - an MRI scan shows the ligament damage done in my foot.)

My chest is fine... or so he said. My heart is a normal size, but there was a white area that showed up on the X-ray of my chest that I am a little concerned about on one side of my chest!!! I tried to ask, but he just put it aside and said it's normal! I really don't think it looked normal!! I smoke, but I'm pretty sure even smokers shouldn't have a big white patch showing up on the bottom of one lung!

I'm friggin' scared now!

After the X-rays, he had me show him my range of mobility, moving my limbs in a very standard way. He seemed to give lots of attention to my hands and arms which are fine and completely ignore my hips which have begun giving me trouble!

My knees he didn't even look at! Didn't even ask me to roll up my trousers for him to look at. He stretched my legs out but didn't even bend them! I was frustrated so I showed him myself, explaining when it begins hurting in my knee when I stretch it right out and when I bend it in.

He then went on to tell me that it was probably not arthritis. He said the pains were probably a result of my damaged foot and that I was putting additional pressure on my joints from the change in weight bearing on my foot.

Ok. That sounds reasonable enough, but the major problem is that my GP and I had a lenghty discussion about this and it would be very unlikely for this to be the case as the joints that hurt the most are actually the ones getting least pressure from weightbearing.. For instance my right knee is the worst one which is on the same leg as my damaged right foot. If change in weightbearing etc was the cause of pressure and pain of the knee joint it would be far, far more likely to be the opposite left knee to be in the most pain!

He then 'wrote' his consultation letter in front of me on his tape recorder thingy (can't remember the name of those things). The things he said were just ridiculous!

Apparently my left leg has 'hypermobility'. I assume he was meant to say that my left leg had a wide or full range of mobility, where as my right leg does not have quite as much movement, or a lower range of movement without pain. But instead he stuck with the term 'Hypermobility'. I have never had Hypermobility in my life! I was tempted to give his backside hypermobility with that tape recorder thingy!

But the term Hypermobility has been left in. So I suppose I'm expected to do the can-can with my left leg now!

He said that I was to have an ultrasound scan of my hands (which are fine) and my knees (which I hope will show up something - or else I must be going mad!) to show swelling and inflammation. I'll be damned if there is no swelling in my knees. What else causes them to turn bright orange, burning and show a size increase!

He asked me if it was fair to say that the pain in my knees where rather global around the knees to touch, which he said did not suggest joint problems. I told him that was not a fair assumption what-so-ever! And it was an assumption since he hadn't even looked at them. I have one particular stabbing pain in the joint of my knee. He seemed to dismiss that and give no response!

He said I would notsee him again, unless the ultrasound showed evidence of inflammation. But he said it was unlikely! Grrrrrr!

I was actually having to hold back my tears by this point when he basically scare-mongered me by saying that if there was inflammation of the joint then I would have a steroid injection put in to the joint! I have had 2 steroid injections put in my foot and I told him that they were very painful and did no good at all. His reply was that it WOULD do good if there was something wrong with me - implying that I was making my pain up! I said I was not prepared to have a steroid injection yet and he said in as many words that I could have the injection today, there and then, but if I didn't want it then there was no reason for me to be there!

I eventually got some truth out of him that there were tablets available, but he was not prepared to give me them and the injection was the only way!

I know a bit about steroid injections and I know that if they are done wrong, they can actually cause even more problems! It is no where close to being a 'safeguard' procedure!

Annoyed, I was sent out of his office, had some blood taken and told to wait for a letter through the post.

I'm so friggin' close to letting the tears roll out now!

Heather65

Oh poor you Avrielle,
what a pain i sometimes think they have no clue whats going on ,do these people not talk to each other ,i had the same problem so now and fighting to get some help ,its like you dont matter we know more about our illness then they do !,its so frustrating for you, you should go back to your doctor and see what they say ,try not to get down this is only one hurdle keep going ,
take care ,Heather x

earthspirit

oh no! i only have a few minutes to be on here so i dont have time to write much.


i think your experience is not abnormal. xrays seem almost worthless sometimes as my own have shown and yes they do indeed focus on your hands and feet and ignore the rest. i was just asking on this forum how to get more done recently.

it is indeed your final decision on meds and ive had 2 steriod intramuscular which were virtually painless - one worked a it for a couple of weeks and the other did nothing.

problem is, unless you are willing to take the meds they offer, they have nothing else to offer and you can only hope for good pain relief and a lessening of the inflamation.

i know you keep yourself busy and probably do far too much on your feet which will make the knees worse. take it from me that it does.

try doing some gentle physio on yourself in the bath and keep the muscles strong and supple. then rest - only do a few repeats of some bends and stretch. lie down more whenever the pain seems like its having a wild time to itself. even a 15 min lie down can make you feel much better.

i personally have very little wear and tear or damage and yet im in 24/7 agon with almost 200 flaring joints.very very slowly these are going down but i still cant walk and cant stand for more than a couple minutes.

the rheumatologist is not god and he has no cure and if you dont fit neatly into a slot you might be offered nothing more than steroid jabs. keep making more appointements with docs and put the pressure on them to help you. my own docs recently told me that i just had not made enough fuss. - lol we dont know what goes on behind closed doors and some people get taken seriously and others dont.

painkillers like dihydrocodeine paracetamol ibuprofen diclofenac are not going to do you too much harm so ask doctor for some combination more than you currently are taking.

i hope you are calming down a bit and cried it out of your system a bit. hopefully some others will have additional comments to add about what you might be able to do next.

DebraKelly

Remember you can ask to see another consultant, which is what I did and its the best thing I ever did.

I would recommend some physio too.

Don't worry about steriod injections, I have had 2 now and they are certainly worth getting, yes you will feel slightly uncomfortable, but its worth it in the long run.

Hopefully you will get to the bottom of whats wrong.

(((hugs)))

dreamdaisy

Hmm, it doesn't sound too good from your description, what a knock-back for you. I work on the basis that the rheumatologist is the expert and knows what to check and what to offer. Yes, I am the patient and the one in the 'front line' so to speak, but he is the one with the knowledge and information. It is difficult meeting someone for the first time, it's difficult to remember all the points you want to communicate and it's difficult to remember everything that has been said.

Hypermobility refers to joints that have more than the usual range of movement and quite a few on here have hypermobile joints (or discover that they have during the course of appointments or treatment). My feeling is that the joints that are hurting you won't necessarily be the weightbearing ones, they could be the others that are being thrown out of position by the altered way you move.

As for the steroid injections, rheumatologists and rheumatology nurses are the people you want to be doing them, they are a standard treatment in the early days when it can be difficult to determine exactly what form of arthritis may be troubling one. They don't work for everyone but if they proved to be of benefit to you that would have been a good thing. On the plus side you have been seen so you are 'in the system', more tests are to be done which may reflect better what is going on with you - it can be very hard to diagnose an auto-immune arthritis (it took my docs four years to label mine (but that changed nothing treatment-wise).

We become so used to doctors having answers but answers are often sadly lacking for people like us. It can take time to establish what is going on, sometimes it seems like nothing but tests after tests after tests but the goal is always the same: to find out what's what and to get some treatment. Yes indeed, today was a set-back for you but I am sure you will 'bounce back', stronger and more determined. Take care. DD

stickywicket

You’ve had a tough, scary appointment, Avrielle but I hope you’ve managed to calm down a bit by now and you feel a little easier. If so, maybe you'll feel up to allowing me to play devil's advocate here as I think it's possible, from what you've written, to take different things out of this appointment.

Your rheumatologist did X-rays on hands, feet and chest. Hands and feet are where RA usually starts so that was actually a good thing to do whatever other problems you have and that would explain why, in examining you, he paid a lot of attention to your hands and arms. I don’t know about the chest X-ray but I would never attempt to ‘read’ one as I’m not trained to do that.

You say that ‘If change in weightbearing etc was the cause of pressure and pain of the knee joint it would be far, far more likely to be the opposite left knee to be in the most pain!’ Not necessarily. It would depend entirely on how you were compensating. When my TKR finally gave up the ghost, I actually saw the orthopaedic foot surgeon because all my pain was in the ankle below it.

‘Hypermobility’ is a problem in itself. Maybe you could read up on it. AC might do something on it.

Your rheumatologist is right about the steroid injections so why not give them a go. Lots on here have done. They don’t work for everyone but, for some of us, they work like a dream. If ever I needed another I wouldn’t hesitate. Everything in life and in medication can go wrong but most things don’t. I assume the alternative meds he mentioned were steroid tablets. These, too, have their downside and I think it’s quite reasonable not to offer them when there’s an alternative.

I suggest that, when the letter comes, you make an appointment with your GP, who you seem to get on with, and have a chat about it. I think the rheumatologist may not be as bad as you feel. All auto-immune versions of arthritis can be very hard to diagnose and not all arthritic pain is of the auto-immune variety. That is very frustrating for so many on here. I hope you can get some decent pain relief soon.

traluvie

Hope your feeling a bit better now.

Sometimes when we go to our first appointment we want all the answers there and then. Trouble with arthritis is that is not always the case. If you do not show obvious signs in blood tests or x-rays the docs are then limited to what they can do. My bloods and first xrays were fine, it was my persistence and my rheumy beleiving in me that made him do bone scan which showed inflammation.
Sometimes it is a case of trial and error and persistence. Have you tried doing a diary of how things are for you, such as when you wake in the morning how your feeling, any stiffness, pain etc tiredness, where pain is, how long for, what kind of pain? Might be worth doing that for 2 weeks and going back to your GP with it and talk it through with them.

Don't give up,

earthspirit

dreamdaisy wrote:

Hypermobility refers to joints that have more than the usual range of movement and quite a few on here have hypermobile joints (or discover that they have during the course of appointments or treatment). My feeling is that the joints that are hurting you won't necessarily be the weightbearing ones, they could be the others that are being thrown out of position by the altered way you move.

I THINK THIS PART OF WHAT DD says is very important for all of us. i was once seen by a well known internationally famous neurologist when they thought i was mad and he said there was nothing he could do to help me as i was all squint and needed to fix this myself. well i thought to myself what a bl**dy cheek with him being who he was!

at the time, it was mainly my neck and skull problems and pain that i was trying to fix. i had no DX of RA and didnt have nearly all the symptoms and flaring i do now.

however he was correct and i focused on getting my skeleton back into the correct position, changing my footwear and making sure i walked and sat in a way less stressful to all my joints.

if you try to do this it might slow you down quite a lot but it might also give your hips etc a bit of a break & so an escape from pain. this is what i now try to do with myself when my hips are screaming at me and my knees are buckling and my ankles are breaking. i accept that the only real issue is one single knee and it is this affecting all the rest.

was my physio who got me doing this again rather than myself realising how deformed my body was looking as i was walking

valval

hi this is what we all dread did he get bloods done mine show inflimation i would go talk to your gp and get second opinion at least you will know if he was any good we have to trust them and i get the feeling you will be unable to trust this person even if they do find something wrong good luck val

tillytop

Hello Avrielle

I am so sorry you feel so upset and frustrated after your appointment. You are definitely not alone in that - I have lost count of the number of times I have come out of appointments feeling as if I haven't been listened to or taken seriously and how often I have said "**** this, I'm never going back". My trick these days is to try to resist the temptation to go over and over the appointment in my head and not even to think about it for a few days (not easy I know!). By which time I am usually calm enough to see the wood for the trees and to decide what next.

But I would take heart from the fact that he is doing some more tests - these tests are probably not cheap and NHS resources being what they are, I don't think he would be doing them if he really felt they weren't necessary.

Re the steroid injections - there I DO think the consultant was wrong because as I know from what I read on here, steroid injections don't work for everybody. But my experience is that the steroid tablets tend to be used when the inflammation is widespread so they wouldn't normally use them when a more "targeted" steroid injection might do the trick. And oral steroid pills are not without their own risks so tend to be prescribed with caution.

I would also say please don't underestimate the effect that walking or standing badly can have on the whole body - even the bits which are not necessarily obviously connected with the part which is giving the problems. In the early days of my RA I had very bad pain in my hips and was convinced that the RA was affecting my hip joints. But the rheumatologist told me that he thought my hip pain was purely down to the fact that I was walking badly due to inflamed feet and knees and he was right. Once my RA was under better control and I was able to walk more comfortably, my hips were absolutely fine.

I hope you don't have to wait too long for your scans because that will give him some more information about what is going on. And if you are worried about your chest x-ray, why not discuss this with your GP and ask if you can have a repeat x-ray to set your mind at rest?

Thinking of you.

Tillyxxx

lynnmick

Hi Avrielle,

I so sympathise with you, i think sometimes these rheumys are very unsympathetic in fact i have an appointment to see mine next week, haven't been since Nov last year. When i get in there i just know that the appointment will probably last all of 5 minutes, and i will probably come away with an appointment for a neck and elbow injection, i know my fingers and hands are alot worse than when i last saw him. Another thing that i am not keen on is that his English is not good and i can't understand him he also speaks really fast, i usually end up asking my GP to decifer his letter. Not looking forward to it at all.

I might ask to be referred to another one if i think its necessary, i should do the same if i were you.

Chin up and hugs

Lynn xx

frogmorton

Oh Avrielle

I am so so sorry lass

You are not alone this is often the way people get treated when their bloods are negative (I assume yours are like mine?).

The Xrays of the hands and chest are standard starting procedure. They like to have a baseline for suture XRays. I think a lot of them will be 'clear' as damage takes times in some cases to show.

The scans may yet evidence your pain, but if you are and you are called back in please do not go alone...in fact seeing a different rheumy might be an idea???

My suggestion is that you take some time to cry(if you need to) rant (on here if it helps) and recover from this traumatic experience.

Then I would see your Gp who sounds to know you far better and decide on a way forward.

Lots of hugs for you

Toni xxx

Colin1

Oh dear Avrielle come here gis a hug, what a time you have had, i really dont know what to say. All i can tell you uis that many of us have been miss diagnosed and it can seem ages for a propper diagnosis to turn out. However i would have gone for the injections to find out if it works for you. I know they are painfull i cant begin to count how many i have had. Perhaps a good chat with your GP who seems to be on your side. I understand how bad you feel and on top of all that still in pain.
Hope your feeling better soon
Colin XX

earthspirit

i got told the chest xray was done to ensure there was none of something i cant remember inside the lungs which would contraindicate use of dmards etc - the reason i remember this is cos ive got the dodgy healed bone leaning against my lung and was concerned about the effects of mtx, lowered resistance and potential coughing.

there may be other reasons but i thought everybody with ra got the chest xray??

Karen293

Hi

I just wanted to join the others and say I've had many bad appointments and wanted to cry or scream and shout. At my hospital they seem to have so many people to see and tend to treat people as objects and just have a procedure they follow. I've had to have a few steroid injections in my time too. They are painful and often don't help for long, if at all, but found that was the path I had to go in order to get any further.

I wish you luck and would go back and chat to your GP who seems batter than mine!

Take care

Karen

Avrielle

Thankyou everyone for your replies.

I went a year with my foot misdiagnosed, until they finally did an MRI Scan. By then it was far too late to do anything that would help.

I had two steroid injections when they were blindly treating me. One was cortisone and I can't remember the name of the other one, but they were unbelievably painful - I mean I was close to fainting - and I have a small scar on the sole of my foot from where the injection went in, still.

They did no good what so ever. And the second injection actually made my foot worse!

So I am very unsure about having a steroid injection put in to my joint. It could be that having the injection in the joint isn't quite as painful as in the sole of your foot. But I am just not ready to try it yet. I'd need to buid trust with the person who would do the injection and I don't think it is even the Rheumatologist who does it.

As for the hypermobility, Maybe I do have it in my left leg. But I have been looking at this and I just can't see any difference between the joint movement range between my left and right leg. It is still possible, but I would want a second opinion on that.

I will go back to see my GP and I will ask if it is possible to see another specialist. I don't mind travelling to the city as I can get a patient transport service there. So will ask if there is another doctor available.

Thankyou for all your posts. Much appreciated. xx

earthspirit

avrielle - if you are all out of kilter due to one damaged or two damaged knees then physio really are quite wonderful.

i have been unable to walk for 7 months. its been hell. slowly ans surely i am regaining the muscle and balance required and i now dont look like a deranged zombie when i get out of the car and walk a few steps to the shops. its slow and sometimes quite painful but i have to say 100% it is working - 3 weeks ago it was suggested that i have an op on my knee and today physio said that i would not now be considered for op as i have regained so much flexibility.
my knees have thick sore and lumpy bits but i dont give too hoots about what they look like as long as i regain the ability to walk. 3 months ago they were suggesting wheelchair and i thought thats where it was leading - today i feel so much more confident that it can be fixed.

good luck in whatever you try to help and hope you get some relief from the pain soon

dreamdaisy

Hello Avrielle, how are you feeling today? DD

Avrielle

Hello. I'm feeling a bit better about it now. But I'm not comfortable with the thought of returning to see that doctor. I will see my GP when I am next able, and I have a pain management appointment coming up next week, so I can speak to him also.

I'm going through a bit of hell just now - not just in regards to health. So I need to work hard to keep strong and my mind focused or I fear I will fall flat on my face.

Susiesoo

Hi Avrielle - I'm sorry to hear you are struggling at the moment. Just want to say I am thinking of you and hope things soon improve. Chin up!

Best wishes, Susie