After being ill since Nov 2016 with no firm diagnosis, or at least a diagnosis that keeps changing, I have not the bullet. I have an appointment with Dr Rod Hughes today. First I had GCA then I didn’t. Then I did. You know how this goes. Got down to 15mgs eventually and muscle pains started. If it isn’t PMR then it is an imposter doing a really good act. My Rheumatologist recently said I have RA or PMR. Tests for RA were negative. I didn’t want to muddy the waters with a further opinion but feel it is time. Thank you pmrpro for clearing my thoughts. To get the the kernel. Last night I felt anxious. Found it hard to sleep. Today I feel slightly panicky. Most unlike me. I feel a bit like you would standing outside the headmasters room waiting to be expelled. What is going on with me? I want to use my time with the consultant efficiently. Don’t want to waffle. Certainly don’t want to cry although I bet i do. I want to cut to the chase but it’s been a long road as it has for all of you. I will bring doctors letters and blood results with
Me but don’t want to forget something crucial that may help him get to the bottom of all this. I am sure I am not the only person to have experienced this or maybe I am. If I mess this up I will have to blame the pred head. I want him to confirm a diagnosis if he can but do I want him to? I am in such a fug. Jeany Mac what did I make the appointment for
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Elaine-W
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As someone said to me...breathe. it's easy to understand your nervousness. It probably feels like a last chance saloon. Keeping my fingers crossed that you get some clarity and peace so feel better after the appt.
From what I have read, RH is not only a good thorough doctor, but kind and patient too. So set aside your worries on that score.
A quick jot down of your symptoms and chronology might help to focus your mind, but I doubt RH will forget anything even if you do. It’s a two way thing, and he can ask you questions and dig a bit for anything he needs to know.
Extra anxiety is a bed fellow of pred I think, and not knowing where you stand re diagnosis feeds that demon.
If you cry? So what? You won’t be the first, and not the last. And it’s a good expression of your fears and frustrations.
One foot in front of the other.....and you’ll feel soooo much better after your appointment. Take courage!
Thank you Soraya. I have complied my letters in date order for him to flick through. Questions written in my diary. Tissues in my bag. I just hope I don’t do the ugly cry. A dainty one will do 😃
I would e exactly the same, I would make notes, which I think they expect you to do. My understanding from reading on here over the last few years is he is seeing many of us in your situation, so he will be aware how you are feeling...
I may see him myself in the future if I get stuck again after these 6 years of struggling
Elaine, I took a typed potted history to my first appointment with Dr Rod Hughes, including symptoms, dates, medications, previous scan results and poor experience under previous rheumy that left me undiagnosed and bed/wheelchair-bound for a year, so I didn’t need to call on my inflammation-addled brain! Take a deep breath and R-E-L-A-X, and let the really lovely Dr Hughes do the rest.....and he will, trust me and many others on this forum who have been lucky enough to come under his wing!
Make yourself some crib notes of points you need to get across and tick them as you go. You could record the consultation on your phone. I haven’t met Dr Rod Hughes but his reputation
precedes him as an empathetic doctor, who is an expert in this field.
You should not be made to feel like this, you are the patient currently suffering from a serious systemic disease. It is no fault of yours that a definitive diagnosis has not yet been made and communication with you has been poor so far.
Your virtual army of supporters from here will be right behind you. We’ve got your back.
This made me think of my best friend. Before I suffered clinical depression, my emotions were locked up tight. Therapy really cracked me open. Now, a greeting card can get me weepy. If I'm in my best friend's office -- we work in the same building -- and talking about something that is even half-way emotional, she'll gently push her box of Kleenex my way. I bet she does that with her patients, too. She's one of those really good doctors -- and even better best friend. So, cry if you feel the need and don't be ashamed to do it.
I know and I don’t know how to be different. I have kind of shut up shop and not really expressed what is going on with me. You all know more than some of my friends of 30 years. I don’t want to worry them with me. I actually go mad at my husband if he discusses me And my health. I’m a bit of a secret squirrel I suppose.
The others have given you excellent advice. I just want to add that you won’t be the first patient that he will see that has had a difficult road with diagnosis. He will know those specific questions to ask to help clear those muddy waters. Remember it’s not your job to give him the answers you think he may want to hear, but rather the answers that are true to you.
Also, if you don’t have someone going in with you, make sure you take notes. Or... I once went in with a friend when she was meeting her surgeon for his final comments after surgery for cancer. She knew she was too emotional to remember all he was going to tell her. When it came time for his comments and recommendations after the physical exam, I asked him if I could use my smartphone to video (option in your camera) what he was saying. He felt uncomfotable with the phone pointing at him, but he was fine with me pointing it at the ceiling, thus still capturing his words. A bit unorthodox, but it worked as she was able to refer back to it, I was confident I didn’t miss getting important information, and she was able to share it with her husband, who could not be there that day.
Best wishes to you. I hope you get a correct diagnosis and answers that you need.
You are worried that you will meet someone else who you feel dismisses you - I think that is unlikely with RH.
Why did you make the appointment? Because you want to be sure whoever you see listens. He does. You may not get the dx you think you will, it all depends - but you can be sure that he has really thought about it and knows that YOU need a label. Whether he can write it is another matter - but the most important thing is to find the right way to manage it, which is the crux with almost all autoimmune disease.
As usual you bring common sense and seem to be in my head today. There is a fear of dismissal you are right. I feel calmer now and will see what the appointment brings,
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Back to the worrying stage
Age/life stage advice pls
Late stage reduction?
Final stages of tapering
