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berly67
03-01-2007, 08:21 AM
I still feel like I've been left hanging from a tree branch in the wind here. I had my second visit with the rheumatologist. He is great at addressing what is irritated, hurts, etc. He is also great at telling me what "it" isn't. He did not tell me what I have, nor what I should expect, watch for, call him if I experience...I could go on but I think you get the point. He ordered yet more lab test. Labs I"m not sure why he didn't check the last time. He ordered some Cardiolipin testing. All the test he ordered the end of Januaray were neg or within normal limits. The C3&4 were normal so he said that tells him the disease is not active. My sed rate is withing normal limits again telling him the disease is not active. Does it still mean I don't have Lupus?? What I do have if fatigue (extreme), low grade temps, rash, joint pain, tendonitis, a positive ANA and an elevated single stranded DNA, over 400. All other labs, such as ena, Anti double stranded DNA, RA, RNP, Ch-50, are either negative or within normal limits. I do not have any active organ involvment at this time. Sooo, does that mean I do not have Lupus. What is this Mixed Connective Tissue Disease? The doctor merely said that I"m one of his more intresting cases. If that makes you feel warm and fuzzy inside, then I need a shrink for sure. If anyone has a similar situation and can help me understand this I would really appreciate it.

Missy
03-01-2007, 07:22 PM
So sorry you are having trouble. I have known a lot of people whose Rheumies had a hard time diagnosing them and didn't understand why it was so important to the patient to be diagnosed if something is wrong. As my aunt said, " I need to know who my people are - are they the Lupus people? The scleromderma people? The Sjogrens' people?" I think some Drs. don't understand the need for support and comraudery (did I spell that right? probably not!)

Diagnosis has been a challenge for most of us here, so we can really understand and feel for you. Feel free to vent anytime! Our bloodwork is not always a good indicator of how we are feeling. I am off almost all my medicine and my labs have been looking great, but I have been fatigued out of my mind for the last week, for example.

Good Luck! I will be thinking of you!!

berly67
03-02-2007, 06:34 AM
Thank you Missy for your response. So you got diagnosed with Lupus but you are currently so far into remission that your labs are normal?? When that happens do some Doctors say you never had it?? I really am having difficulty understanding things.

Missy
03-02-2007, 08:54 AM
Hi!

No, there is no question that I have Lupus. Most of my labs that we use to gauge how my lupus is doing are in the normal range now, but that has been due to a lot of things (medication, rest, acupuncture, yoga). I still have to get labs done every two months and see docs about every three, sometimes more often, between my Rheumy and Nephrologist.

What my Rheumy suggested I do from the ge-go was keep a record of my labs. I keep a spreadsheet with all the notable lab results on it. So, I can look back over the three years I"ve been diagnosed and see how my sed rate has gone down and if any kidney numbers have been off. It's been helpful to me.

But, Lupus is not so simple as just labs results dictating how the disease is affecting you. And there is always the chance of a flare-up in disease activity, even when things have been going well, so I always try to stay in touch with how my body is feeling and changing.

I hope this helps a bit! Feel free to ask more questions!

berly67
03-02-2007, 09:06 AM
Wow, that really helps me understand more. I have been wanting to ask allmy doctors for copies of my labs so that I can see what they see and learn about all the different stuff. None of my doctors have offered to do this for me so I felt uncomfortable asking them for copies. I don't want them to think that I'm second guess them or just in general get the wrong idea. Doctors tend to make you think you can not have these things. So it is the sed rate and the C3 & 4 that are within normal limits for me now, that caused my doctor to tell me that my disease is not active. My husband mistook that to mean I do not have Lupus and when we got out to the car he said the first thing we are going to do when we get home is through away all those Lupus books you bought.

MARYCAIN
03-02-2007, 09:49 AM
Hi, Kimberly - the sed rate and c3/c4 tend to reflect the disease activity, so they can go up or down from day to day. During a flare, the sed rate tends to go up and c3/c4 tend to go down, so they are often used as a measure of disease activity. But many people with lupus are fortunate enough to have periods of remission between the flares, when the sed rate and c3/c4 may be normal. And there are some people who don't have a high sed rate even during a flare because their biochemistry is different. So the normal sed and complement levels don't mean you don't have lupus, just that your lupus isn't affecting your labs at the moment. And both your sed rate and your complement levels can be affected by your meds, especially prednisone, so you have to factor that in too.

berly67
03-02-2007, 10:15 AM
That is very helpful to know. I am on Prednisone currently and two muslce relaxers. Right from the beginning the lab values that pointed to lups were a positive ANA and a elevated single stranded DNA, over 400. My sysmptoms amount for the rest of the criteria, but the rheumatologist said that on one hand I have signs of the disease but then my labs show indicators of not having the disease. He told me my sed rate would be high and complement levels low. I have not organ involvement at this time. So I think that is why he doesn't want to pin a label on me even though my GP did. He told me on this last visit that I was definately one of his more complex and interesting cases. He ordered cardiolipin test this time. I want to call and ask for my results but I'm scarred to, they were drawn on Tuesday. You have been a big help to me and it is sooo nice to talk to someone that understands what is going on. I told myself before my first visit with the Rheaumatologist that I didn't have to have a diagnosis, just releif for my symptoms, which I must say he has addressed them very aggressively and I've gotten some great results so far, but on the other hand I feel in limbo, am I a "have" or a "have not" when it comes to lupus. So far one doc says yes and another sasy I don't know.

MARYCAIN
03-02-2007, 10:32 AM
Don't feel bad - a lot of us go through diagnostic limbo hell - I started out with a diagnosis of undifferentiated connective tissue disorder, then lupus and Sjogrens, then scleroderma, then docs finally decided I had a "lupus-dominant overlap" disorder. It can get very confusing because many people with autoimmune disorders don't have "just" one - they may have two or even three or four autoimmune diseases. It can make it very difficult for doctors and patients to sort out which symptoms go with which disease. Doctors can be very reluctant to diagnose anyone with lupus unless the diagnosis is very clear-cut, because they know the diagnosis will stick with you for life, and affect your ability to get insurance, or even some jobs. It is frustrating, but as long as your doctor is listening to you and treating your symptoms, that is the most important thing.

berly67
03-02-2007, 11:56 AM
That is very helpful information and yes I think it is great that my doctor tackles each complaint head on and trys to eleviate it. So when you get "sick" what are your problems and symptoms. Has your Lupus affected a major organ and does that organ recover during remissions back to its origional state?? I know that might sound silly but I'm just not sure how this all works for different people.

MARYCAIN
03-02-2007, 12:12 PM
Unfortunately I'm not one of those people who have flares and remissions, the disease stays pretty much active for me all the time. I have both kidney and neuro involvement (seizures, neuropathy, TIAs) so I stay on meds. I have quite a bit of joint involvement, but almost no skin problems other than the malar rash and being photosensitive. The photosensitivity can be fun when you need to be outdoors - I go through a ton of sunscreen and own more hats than anyone I know. That is one of the frustrating things about lupus - people think getting out in the "fresh air and sunshine" is a cure for everything, and don't realize that the sun can make someone with lupus even sicker.

After a while, you will start to notice patterns in your symptoms - certain things that make you feel worse - and you have to tailor your routine to what works for you. Some people notice that certain foods trigger flares - I always feel worse when I'm stressed or really tired. It's not always that the disease is more active, just that it affects me more. But everyone's experience with lupus is different, and most of us manage to lead "normal" lives anyway - most of us work, a lot of us have children - you learn to balance your life so that your illness doesn't take over. you may have lupus, but it's important not to let lupus have you.

berly67
03-02-2007, 01:08 PM
Wow so even with kidney ane neuro involvment it was still hard to place your diagnosis. I don't have any abnormalities in my urine, just blood and lots of calcifications and stones. We are looking at a stone retrieval or Litho at the end of the month, I have a 3x6mm on the right and several 3x3 on the left. I was thinking because I had no obvious organ involvement that is why there were reluctant to diagnosis lupus.