Specialist!

[LillyAlfie]

Is there anyone that feels like your not getting through to your doctors? I keep telling them how bad i feel and its like there not listening to me?

[Paul_Howard Partner LUPUS UK]

Hi LillyAlfie,

I'm sorry to hear that you feel as though your doctor is not listening to you. How long have you been seeing them for? Do you feel that you could discuss this concern with them? Perhaps you have a friend or family member that you could bring with you to your next appointment?

If you feel that you are unable to do this or it wouldn't help then maybe it is worth seeing a different doctor?

[LillyAlfie in reply to Paul_Howard]

Hi ya iv been seeing them for 3 years! thats how long iv had Lupus. my Dad comes with me to every appointment. iv moved to Dr Edwards who runs and opened up the London lupus clinic. its not so much him its the people who around him.

[Paul_Howard Partner LUPUS UK in reply to LillyAlfie]

What do you mean by 'the people around him'? Could you speak with him about this concern of the other staff there being an issue?

[Purpletop]

I thinking we all do at some point in our quest to manage our illness. I've recently had a similar experience - saw a neurologist and a neuro-ophthalmologist who were so focused on answering one question that they didn't pay any attention to what the symptoms meant for me and I felt as if I was speaking but my words were silent - no impact whatsoever. I'm not saying that they didn't spend a lot of time going through everything with me, because they did. It is just that they focused on trying to diagnose, whilst I was trying to get an understanding of what caused it and how to treat it.

We each have our way of dealing with doctors but I'll bet it is a struggle for all of us at some point or another. We persevere, though, what else is there to do?

I agree with Paul above, if you feel that the nursing staff etc haven't paid attention, raising it with the consultant would definitely help.

[misty14 in reply to Purpletop]

Hi Purpletop

So sorry to read you had a difficult consultation about your eyes. What have the two specialists said and can you be treated?. X

[Purpletop in reply to misty14]

Specialists said to go home and accept that my eyes are now this way. They don't know the cause, can't rule out the drug nor the lupus. Great, isn't it? Particularly when I saw them privately.

[misty14 in reply to Purpletop]

Hi Purpletop

Sorry to have taken so long to respond, been having technology problems.

So sorry your eye consultations were so unsatisfactory and as you say galling when you went privately!. What are you going to do now?. Can you talk it over with your Rheumy , are you due to see him?. How are you off the drugs?. I so feel for you!. x

[Joyjo]

I had a similar problem a few years in to my lupus diagnosis, so I moved to a different hospital which was UCH London- I think they are great. If your doctor ever says that your blood results show that everything is fine when you dont feel it, just tell them that something must be wrong with the blood results 'cos u feel awful. At the end of the day it's your body and you know when your sick so make sure you stress that to them.

I lived in Germany for 6 years and my Rhuematologist judged the activity of my lupus by the ESR level rather than the C3 complement levels that they usually go by here. I think that is more accurate because the high level always matched up with when I was feeling sick.

[LillyAlfie]

How do you know if your meds are doing there job? thank you joyjo that's interesting to know because i feel like im going mad!!!!!

[annaly]

hey i know exactly how you feel before i was diagnosed with iih i had been into my doctor 2x before taking action into my own hands as she kept telling me its all in my head theirs nothing wrong with me even though i sat their in cried to her and her replie. what do i think the worst could happen i told her i could dropped dead in who would watch and take care of my 3year old.

she gave me migraine pills and said to go home and come back in a aweek and at $60 everytime i got sick of it so i took matters into my own hands.

and got a second opinion and it saved my vision as i could have gonna completly blind if you think deep down something is not right see someone else all the best and goodluck x

[Hidden in reply to annaly]

Sorry, annaly, what's "iih"? sorry for my brain fog lol

" i was diagnosed with iih "

x

[LillyAlfie]

thank you all for the advise, really thank you x

[misty14]

Hi Lilyalfie

I agree with your previous correspondent s that if after 3 years you don't feel your being listened to then a change of Specialist might be very helpful. It's a fresh mind!. I've battled over the years for a diagnosis and a change of Doctor has been beneficial. X

[Marfarm]

Have you seen a rheumatologist? I'd seen a dermatologist, allergist and neuroligist in addition to my gp and gyn to check hormones and thyroid. The rheumatologist is the one who got it and then all the other got on board.

[LillyAlfie]

Iv had a Rheumatologist from day one. x

[Hidden]

Purpletop

Have you thought about starting a thread ? I know lots of people with Lupus got eye problems and visit a Neuroophthalmologist. Thanks for sharing.