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View Full Version : What can I expect at my 1st Rheumie appt.



AndysMamaBear
02-06-2013, 03:50 PM
Im undx'd but from what a few docs have said, it sounds like LUPUS, looks like LUPUS but could be something different all together. So PCP found a Rhuemie for me , who had to review my records before excepting me, I thought for sure she would say sorry we can't, but they did. My appt is March the 5th and Im not sure what to expect. I mean there are so many things that can go along with my symptoms, will she just do blood work for any and every autoimmune disorder or will she pick and choose or what... I have Raynauds which has developed the last few years along with my butterfly rash and also my chronic fatigue, inflammation in lining of my lungs and eyes and also livedo reticularis, mouth ulcers and im wondering where my rash is really from.. Any info or advice would be great. Also, I already have a medical BINDER with my symptoms for the last 2 years, including pictures etc , also containing any and every test Ive had done in the last 3 - 4 months, order by DR. to ... lol like cardio, pcp, neuro... They have ruled out Lyme disease and also MS so that's a start,... right?

Also I thought Id ask has anyone ever had body shocks? I get shocked all the time it starts in tops of my shoulders and it hits hard at anytime. It makes me jump cause it scares the crap outta me everytime, but it also almost puts me on the ground everytime. Just curious???

ItsLupus2007
02-06-2013, 07:35 PM
They will look over the labs and referring notes from your dr,talk to you about symptoms and issues that you have had/are having and do a thorough all over exam from basically head to toe.

They examine all joints,range of motion,etc

If they feel there is a need to proceed with further testing based on history,most current labs and their exam they will then likely send you for further more current labs to help narrow down or help to eliminate if there are symptoms of more than one AI they suspect it could be.

If you walk out of there based on labs that are more than a month old,reading of referring drs notes and exam I would find another dr.This is a highly involved process that is more a rule out/put the pieces of the puzzle together type of scenario than a wham,bam and thank you ma'am type of scenario.As a autoimmune diagnosis that is given to you as an official label can affect future care,insurability and whether or not you can qualify for life insurance.

I thank the heavens that I had coverage in place before the diagnosis.

This is why Drs are/should be SO careful about an AI label.If they discover later they made an error and it is illness X not Z well it cant be removed.It will follow you.

A lot of people get frustrated at the length of time it can take to make a "formal diagnosis" because the drs know there is an AI issue but dont acknowledge something "specific" this is why.It is not like wash out hair dye.It wont go away.

Dont get frustrated though,you have drs listening to you,willing to treat/investigate further so you are making progress.It may be the turtle type and not the hare but just remember slow and steady wins the race-although I dont really think any confirmed diagnosis of a chronic illness whether its autoimmune or not is a "Win" but you get my drift.

Hope your appt goes well and you are able to make progress and further narrow down a diagnosis on the medical side of things.

Be well.

jmail
02-07-2013, 08:26 PM
I've experienced everything from a less than 5 minute "so, are we done with your back issue" visit, to an all day, over eight hour experience with a consultation at the end, where the guy says "I don't know what you have, but it's not Rheumatoid Arthritis". The thorough visits involve interviewing the patient, examining the patient and maybe having them do a few movement "tests". Bloodwork is almost always done, and not just for AI stuff. You might also do a "pee" test of one form or another.

My old hematologist was probably the best doctor I've had, with my current pcp a close 2nd, in that they explain what they're doing and why, and when they go over the test results, they'll explain the significance of the different results and how they relate to each other. As ItsLupus2007 mentions, it can take a while to get a diagnosis, but in many cases, if a doctor suspects a particular "family" of disease, they are able to prescribe some meds that can "cover the bases" and start getting a patient some relief, while the "final" diagnosis is studied for further. I use the quote marks for "final", because I've been given a certain diagnosis by one doctor, and had the next one say "no, it's not that".

There is a "stickie" thread around here somewhere that mentions all the different AI diseases there are. There are quite a few, and a lot of them share some very similar symptoms, which some of those symptoms happen to be similar to other things. You mention "shocks" that scare you. They're ruled out MS, but did they check your thyroid or maybe your B12 levels? Either of those can cause very similar issues, and are easy enough to check for with blood work and by the doctor "listening" to the patient. So take all your info with you, and be sure that if the doc wants to keep something you have, that either you've already got yourself a copy, or they make one for you. Also, take notes however you can. My wife goes with me to most of my appointments anymore, and uses her "smart" phone (but she's still the smart one) to either do voice records, or takes notes and puts things on the calendar. I'd be a mess without her help.

AndysMamaBear
02-11-2013, 07:04 AM
Yes, they checked my B12 a few months ago and that's good and thyroid, but they just checked thyroid again Thursday or Friday but I haven't gotten results yet. Mainly because of my hair loss. They did a ANA direct a few months ago which came back negative, but some Dr says it worthless and others say it's not idk . My pcp also ordered a ANA panel, Lipid panel, um hmm cant remember oh a cmp cbc and 1 other thing. ... Now my sister who's older has had a ANA panel because of the fact she has miscarried about 8 times or more and that's if she can get pregnant at all. Her results were she had a tier of blah blah can't remember but I do know it was a speckled pattern. She has been having some trouble with joints, hairloss, etc not as much as me with the butterfly rash and other stuff, but I keep telling her to get it looked at as well , but she is a nurse in charge of an entire nursing home and she doesn't have "time" lol... Also she does have neurological disorders as well with narcolepsy and cataplexy (spelling?) I'm thinking she's waiting to see what results I get before she looks into hers. . As for result, every time I have lab work whether blood tests or urine at the hospital, before I turn them into lab, I write on the lab order "send patient copies of all lab results, including FULL reports" usually have them in mail within a week of having them done. So I can keep track to although for me, it causes me to analyze everything on it and why this was low or high or etc etc and why the Dr called and said everything looks o.k. .. being in not a pro and I just use what I find online in sure I'm mistaken everything lol but the lands to say right on it whether it is a high or low value and it also shows the range in which the lab user for that. Lol anyone else do that? Lol .