Telephone appointment with Rheumatologist

[Mannequin18]

Hi all ,hope you are all keeping safe and well.

My question is, how can I be assessed over the phone by a rheumatologist. I saw the same Dr in January, and they were not helpful then. But my ANNA test is even higher than it was then, something is going on. My blood tests showed either Sjogrens or Subcutaneous Lupus.

I do have other autoimmune conditions. And that is what she was focussing on.

What can I possibly tell the Dr over the phone. She treated me with contempt the last time.

I can only tell her the same things.

I despair.

[Spanielmadlady]

Hi.not sure I can be of much help as I get on well with all 4 of my consultants so my telephone/video appointments have gone ok.i have however come across a few arrogant drs and I wont be walked over. Arrogance revs up my fiesty side 🤭.all I would say is be confident and stand your ground.tell her how things affect you, question her, make her explain things and YOU ask what the treatment plan is going to be.if you still feel she is treating you with contempt ask for a second opinion or to be referred elsewhere.good luck 🤞

[Mannequin18 in reply to Spanielmadlady]

Thank you for your advice. The last time I saw her I was like a zombie. I couldn't string a sentence together. Maybe I will have more confidence on the phone.

[Spanielmadlady in reply to Mannequin18]

Write down what you want to ask or say.the wait is so long inbetween these appointments you've got to try to get what you want and need from them xx

[saltrock]

I agree, write everything that you want to say down and tick it off as you discuss it. I found that if I didn’t I would jump around and get off the phone and realise I’d missed some critical points!

[Mannequin18 in reply to saltrock]

Thank you for your help and advice.

[Maddymay65]

Mannequin18

I agree with other replies, write down what you want to say before your appointment.

If they continue to be unhelpful then when you get your next appointment ring up and ask to be assessed by another doctor.

I am sorry, hope you get on better this time.

Your appointments themselves should not be making you ill with worry, good luck M x

[Mannequin18 in reply to Maddymay65]

Thank you, you understand very well.

[RosieA]

I agree with the others, write all the questions down that you can think of. I tend to underline key words in red as I find listening intently and scanning questions tricky, especially if it's a fatique laden day.

Place the call on speaker phone - having your hands free can also help you focus on points and to write things down.

Don't be indimidated by silent moments (I find these trickier on the phone as we haven't got the non verbal signals to show us that someone is thinking/reflecting).

Ask her to summerise the key points or do so yourself, e.g. 'My understanding from our consultation is...' 'The treatment your suggesting is.. because...' 'Please could you explain the implications of my blood results..' "Why do you think x rather than y?' What is your rationale for..?

Sorry if preaching to the converted but I have learned this after a few frustrated phone calls - not the Consultants fault but mine - not being used to this different way of communication over such a crucial aspect of my life. I certainly would not use the phone to communicate complex things in any other area of my life. Perhaps it's just a me thing!!

Our NHS trust isn't up to video calls - I suspect these would be easier.

I do hope this helps a little. All the best for your call.

[Mannequin18 in reply to RosieA]

Oh, you have helped tremendously. Thank you so much for your great advice.

[RosieA in reply to Mannequin18]

Your very welcome and I do so hope it goes well. These consultations are so precious. x

[Caramia1964 in reply to Mannequin18]

Along with writing a list of what you want to say , I also send the rheumatologist a list of all the things I am experiencing so they have a record of them in my notes. Its so easy to forget something , even if you have a list written down . They have usually been grateful of this too . x

[Mannequin18 in reply to Caramia1964]

Thank you. That is very helpful. Thank goodness for this site. And peoples experiences.

The appointment went well. Not like my first one, face to face.

This doctor had compassion and understanding.

The phone call lasted over half an hour.

The conclusion was that I have Fibromyalgia.

There s no cure, or medication. But she did prescribe Amitriptyline. She said that sometimes can help.

I do hope so.

Thank you to everyone who replied.

All take care.

[SecondLife]

I agree with all the other comments, my appointment was transferred to a telephone call, I was so fed up that I wrote all of my thoughts down and then rationalised the into questions to ask. The telephone call went well resulting in the fact that she needed to see me, the next day I received a letter to go the following Monday.

[Apricot100]

I agree with all the above comments, and putting it on speaker phone is excellent. Also sit somewhere that empowers you - do you have a desk or study you could take the call in? Even though you might not feel it, it can help to give you that bit of confidence. Remember you're not a quiz question for them to shrug and say "pass, next question". Although they might not know all the answers, they should attempt to research them for you and provide advice.

Always at the end confirm with them what your treatment plan will be and what conditions they are treating you for with that. And if there are any symptoms on your list which you feel haven't been discussed check then that they are also covered with the plan or will be discussed at another appointment (if you are happy with that).

Hope that helps - I feel your pain as I've had some very upsetting appointments with an arrogant rheumy who had an inability to listen (and care). X

[CecilyParsley]

Hi there, I think the phone calls are more of a check in to see how you are doing. If you are anything like me , it is very difficult to convey everything you need to say in a ten minute appointment. I was so anxious and stressed prior to my own telephone appointment with yet another new Rheumatologist. Amazingly in a 40 minute telephone conversation I felt listened to and understood and took the advice given. I actually broke down and cried because it was such a huge relief to have someone actually gave me time and asked how my condition affected me. I think what others have said is absolutely right, make a list of the symptoms that bother you most, how medications are working and any questions you have about treatment. If she is treating you with contempt let her know you find her manner unhelpful..far easier to do on the phone and ask to have a second opinion if she persists. I wish you the very best xx

[Mannequin18 in reply to CecilyParsley]

Thank you for your advice.

I saw this Dr in January because my ANNA was positive. Blood results said Sjogrens or Subcutaneous Lupus.

She dismissed everything with no explanation, except that it was a false positive result, and that she was done with me.

I have since had further bloods by gp and the ANNA is still positive and high. My gp said he was sending me to someone else, but I have ended up the the same one. I am getting more and more worked up about this appointment because I don't trust her. Plus I am in a lull at the moment. Still in lots of pain, but not as bad as when I went to see her.

I can't see anything positive coming out of this appointment.

[Lupusdown]

Hello mannequin18 I totally understand, my advice would be ask them for a face-to-face visit with them or you will find a new rheumatologist! Some of these doctors don't understand but we are all going through so don't let them give you the run-around anymore take care hun

[Mannequin18 in reply to Lupusdown]

Thank you for taking the time to reply.

I had the telephone appointment. It was a different doctor thank goodness, than the useless one I saw in January.

The conclusion of this appointment is that it is Fibromyalgia. Whatever it is it is debilitating and excruciating. I could sleep 24hrs and still be exhausted. I almost fell asleep on the phone. The doctor was sympathetic and understanding. But I feel they are missing something. The ANNA test was positive and high for the second time in 7months.

It's contradictory. .I will just have to go with what they say for now. I'm too tired to do anymore.

Thank you again.

[Lupusdown]

Hi again, it just so happens I'm going through the same thing being tired all the time week. Do me a favor before you start taking their word for things look up lupus brain fog and brain hypoxia if it's possible I think I have both it's a miserable place to be . Please look them up and let your doctor know if anything matches okay take care

[Mannequin18]

Thank you. I will.