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adl011
03-28-2011, 03:38 PM
Hey guys,

I have a slight dilemma. I finally got an appointment to see the specialist who will be taking on my case. He is a neurologist and really difficult to get into for new patients. He's one of the best neurologists in the state according to my gp. The problem is my appointment is for may 17th. I'm having a major flare right now and that's the absolute soonest they can get me in...the nurse at my gp office personally called them to try to get the earliest available appointment. My issue is that with the appointment being so far away, I need some pain management help. Im in tremendous amounts of pain. I could go to my gp (he doesn't really wanna do lupus treatment bc he feels it should be dealt with by a specialist) and try to get pain meds, but im afraid he'd try to give me the typical plaquinil and prednisone thing, which I don't want. They don't work for me. Im afraid he wouldn't give me anything or it could skew any test results/exams I may have in may, aand I want the dr to see my uninhibited symptoms so I know he'll get the full picture. So here's the question: should I try to get some pain meds and possibly have to get the typical p& p or just suffer in silence for 6 weeks or so? Thanks for the input.

God bless,
Amanda

Peridot20_Gem
03-28-2011, 04:45 PM
Hello Amanda,

Sorry to hear you've got a bad flare mate and you can't get in no sooner to see the neurologist but is'nt there a liason nurse who works with the neurologist who you could discuss your symptoms with because i'd ask if there is someone you could talk to, then its for he/she to get intouch with the specialist for advice on what to take while waiting to help you if possible.
This is the only trouble amanda when you have appointment's way off plus it gets so flustrating.

I do wish you all the best mate ~Hugs Terri~ xxx

mountaindreamer
03-28-2011, 07:53 PM
hi amanda,

are you going to a neurologist to treat lupus? i see one but only for the migraines that i suffer through. I see a rheumatologist for the lupus treatment.

also, you said your pcp would put you on plaquenil....are you not already taking that. After i had been on plaquenil for several months, my dr. and i realized that it was not helping me, so she added methotrexate to the treatment plan...the combination of the two really helps me feel better and to live a decent life.

i would not recommend that you suffer through a flare without any medication. your pcp could probably call your pharmacist and subscribe some pain meds. six weeks of pain from a flare without any help with the pain could just make the flare even worse...be careful with this.

keep us posted, hope you are doing ok today.

steve.b
03-28-2011, 08:26 PM
if you are in pain............ see a doctor.
panadol osteo and celebrex are 2 good anti inflamitaries, that will not upset or alter any tests.
i take both of them, as well as my normal lupus medication.
see your doctor.

adl011
03-28-2011, 09:00 PM
Sorry I didn't explain well enough. Im seeing a neurologist who also specializes in rheumatology. I have epilepsy and some cbs involvement, and he's the best around here. The only other rheumatologist in my area doesn't accept my insurance, and I won't see him anyway bc when I did, he didn't run any labs or anything. He just told me it was all in my head. This new specialist seems perfect bc he has a dual specialty that fits perfectly with me. As for the plaquinil and prednisone, I had a bad flare 2 years ago, and I was on the max dose for both and it took me over a year to get even a little better, and they made me so ill I could hardly function
At the moment I'm only taking labatalol for my high blood pressure. Nothing for the lupus. I did get some flexeril from the gp, but its like taking candy. It doesn't even touch my pain. Im not sure if the neuro has any protocol for help outside of visits, but I do know they wont prescribe anything without seeing me first. The only other dr I've seen for my lupus was my gp from age 6-23, when I got married. He's in arkansas, and I live in louisiana now. My new gp doesn't like to give pain medicine. He prefers to treat the cause of pain which is fine and dandy except that he doesn't wanna treat my lupus bc he doesn't feel qualified. So I'm in a catch-22. Trying to figure out what to do.

adl011
03-28-2011, 09:01 PM
Sorry I didn't explain well enough. Im seeing a neurologist who also specializes in rheumatology. I have epilepsy and some cbs involvement, and he's the best around here. The only other rheumatologist in my area doesn't accept my insurance, and I won't see him anyway bc when I did, he didn't run any labs or anything. He just told me it was all in my head. This new specialist seems perfect bc he has a dual specialty that fits perfectly with me. As for the plaquinil and prednisone, I had a bad flare 2 years ago, and I was on the max dose for both and it took me over a year to get even a little better, and they made me so ill I could hardly function
At the moment I'm only taking labatalol for my high blood pressure. Nothing for the lupus. I did get some flexeril from the gp, but its like taking candy. It doesn't even touch my pain. Im not sure if the neuro has any protocol for help outside of visits, but I do know they wont prescribe anything without seeing me first. The only other dr I've seen for my lupus was my gp from age 6-23, when I got married. He's in arkansas, and I live in louisiana now. My new gp doesn't like to give pain medicine. He prefers to treat the cause of pain which is fine and dandy except that he doesn't wanna treat my lupus bc he doesn't feel qualified. So I'm in a catch-22. Trying to figure out what to do.

SandyR
03-29-2011, 07:32 AM
That's such a hard decision to make and I remember being in the position of having to make it. If you decide to seek relief now then make sure to document, document, document your symptoms now. Pictures, videos, doctors notes, etc. That way when you do go to the new doc in May with less severe symptoms he will still be able to "see" something.