Lupus Support Group

Greetings,

I am looking for various questions I should be asking a new Rhumy I am fairly new to Lupus and completely in the dark when it comes to the medical community and how to advocate for myself. All feedback and stories are most appreciated and welcome.

If anyone has ever had a Rheumatologist choose not to treat them for any reason I would also like to read those posts as well. My Rhumy dropped me for what I guess is that she does not like me but did not come out and say that anyway my feelings are hurt and I am very nervous. She has yet to write the referral I need to schedule another appointment with another Dr and I am almost out of medication. I get it people don't like people, my feelings may be hurt but I am a woman I will adjust; however her lackadaisical attitude about my need for my medical records and medical attention is leaving me feeling very confused.

Oh my goodness! That is awful how your doc dropped you without setting you up with another doc right away. I think most of us on here have had their share of bad doctors, I know I have. Over time I have realized you have to be very patient with this disease. It is still frustrating though. I hope you find another doc quickly and you don't run out of medications! Could you possibly see your PCP to get prescriptions while your waiting for the next rheumy? My thoughts are with you.

Best of Luck,

Amy

BunnyHugger you said it - patience and then some. It took thirty five years before a group of doctors took any concern and care about me. I'm happy now but I know the pain you speak of Schrowie. I know for me and what I've heard others say too, even when a diagnosis is given, it’s bound to change over time. My rheumatoid doctors tells me all the time, “We have no idea how this disease works, all we can do is guess and experiment.” – Example, I have been trying for two years to get the pulmonary talking with the rheumatoid – I’m convinced my lungs are getting chewed up – well two months ago I took it upon myself to stop taking the steroid inhalers and my albuterol –and- the hydroxychloroquine I'm still taking is not only keeping my fevers in check but I have no problems with my lungs. I have never been able to make it two days without the steroids and albuterol. So I brought this up and now they are talking. But that took a long time and as bunnyhugger said, A WHOLE LOT OF PATIENCES!!

For me, and it would be cool to hear how others feel about this, but for me I took hold of the reins. I started to realize that I have more control than I think; I can experiment all I want; I can try new things; I can suggest a course of action; and so on. The doctors I have at the moment are really supportive and provide to me the latitude for experimentation and they also provide me with a set of guidelines for each idea I may want to try. The one thing I tend to forget is, even when a solid diagnosis is reached, there’s still nothing anyone can really do about it – I still have to learn to live with it, and it’s still up to me to find what works.

I hope you can find help that you can trust and be happy with Schrowie, I really do.

Ray

I think it is important for your doctors to communicate. Each of my doctors sends an office note with labs, tests, and visit notes each time I see one of them. I thought that was just how things were done but apparently it isn't always that way. I did provide my GP with the names and addresses of all my specialists and then all my specialists have each others name. I think that if you have many docs like most of us do you should try to take the names and addresses of each of them to your appt. I saves on having labs and tests repeated. Then of course the normal stuff like your med list and diagnosis list. Anything you can take with you to provide him with details on your history are going to be helpful.

April

I'm so sorry this is happening to you. Do you know what happened? A run in? Difference in opinions/treatments? Well, it is what it is. Do you necessarily need a referral? Or can you just pick a new one and make an appt? This disease IS so frustrating, and it's hard to be patient when we don't feel good. I would definitely have her refill your meds. Does the pharmacy send over a refill request to the dr? If so, I would do that when you still have some meds left, and call the dr's nurse to tell her the situation. I would also tell her that you need a referral (if you really need one) and it needs to be done this week. Explain why and be assertive. We have to be our own advocates, unfortuanetly. We only have each other, these dr.s don't care after 5pm. Good luck and keep us updated.

Lynnette

i see so many doctors for my lupus- with the rheumy being the main doctor- i understand that it can be really difficult to get all of them to communicate. I try to think of them like a sports team and making me feel well would be like winning the super bowl (i dont know if they see it that way- i'd like to think that they do) so when opne player is 'weak' you put in another player- so when one specialist wants to wait to follow up on a concern i go right to the other players to see who can help out- for instance- my gyno wants me to wait another two months for a repeat blood test because my prolactin levels are high and i am lactating from my right breast (the same breast i had a lumpectomy in druing 2003) there is a strong breast cancer history in my family. my rheumy feels he wants this followed up sooner so he is either gonna order breast scans himself or speak to the gyno, as well as my endochrinologist is running further bloodwork- not to ignore any possibility of pituatry tumor- my neurologist called me too to say she received these results and would like to be kept in teh loop and will provide any necessary records the other docs need.... so it all feels like a fast paced 'game' but you must advocate for yourself or find a primary care physician that will- mine stuck by through the 6 years it took for me to be diagnosed and still advocates for me today... i wish you the best of luck

I have worked with patients in the past who were dropped by their doctors and I know they have to give you written notice of that. They can't just leave you without a doctor. I think the letters I have seen are usually 30-60 days and depending on the problem they can stop you from making appts while you are in that window of time but I would think they would have to refill your meds. I am not sure about that but would get it done so you don't end up without refills while you are looking for a new doctor. I am sorry they did this to you. I hope you find a new doctor quickly.

April

wow! I am amazed that such a thing can even happen!!! This is so unprofessional! Not to mention, unethical and dangerous! Here in Quebec, we certainly don't have a perfect system (far from that) but that couldn't happen. The downside is that a patient can't "shop" for another specialist because there's a shortage in a the medical fields these days and that once you get a referral from your general practitioner, you just don't choose but get whomever gets available first....

I am sending you all my thoughts of courage Schrowie.