Rheumy appt. Update! - Lupus Message Board

teresacar · 07-24-2008, 04:14 PM

Hello to all, just an update on my first appt. with my rheumy. He did a thorough consultation and examination. He's a great human being, caring compassionate and took and hour just asking me questions and of course examining me.

He ordered more lab work which I did last wednesday. He just gave me my results yesterday and he said according to the lab work I have no inflammation at all. My anti-dn-dna is still inconclusive, so so far the only positive test has been the ANA. He is not sure whats wrong with me but doesnt think its lupus, but I told him I still don't feel well. I have read Dr. Wallace book and apparantley it takes years sometimes to get a diagnosis becuase lupus is so hard to diagnose. My next appt. with him is 8/12/08, and he will ck me and follow according to his decision. Is there anyone outhere that has this happened to them and did you ever get a diagnosis? He told me not to worry, becuase it wont do me any good.

I feel like I always have the flu and tired. If anyone can shed some light I will greatly appreciate it!

Love, Teresa

VeeJ · 07-24-2008, 05:28 PM

Teresacar, Did you get a copy of the labs? I'm curious whether OTHER specialized tests were run *in addition to* anti-ds-DNA. As you recall, Dr. Wallace listed in a chart something like FIFTEEN other things seen in lupus.

I eventually was caught positive for anti-Ro, but I'd bet the store that most of my local drs. never tested me for anything beyond ANA & anti-ds-DNA. Thus I suspect I stayed in limbo due to failure to order all appropriate tests.

But as I understand it (but what do I really know?!

), people can stay in diagnostic limbo even where all the so-called "right" tests are run & often. For example, an antibody that rises & falls might eventually be "caught" when the test is well-timed to a flare. Or a person could just progress v-e-r-y slowly. (Etc.)

Anyway, your new dr. sounds alert & caring, and I'm glad he scheduled you for follow-up. Keep us posted & hang in there, OK? Hugs to you, Vee

pixie1985 · 07-25-2008, 05:59 PM

Hi Teresa, Glad to hear you are on our way. It took me 3 1/2 years and 2 MD's before they could be definite with my diagnosis. It is okay for you to ask for a copy of all labs and x ray reports. I was able to show them to my sister who is a RN who gave me some insight
and he gave me a diagnosis. Take care...

Glojer · 07-25-2008, 09:29 PM

teresacar, so glad your appt. went well. I am still in limbo, with tests that are positive sometimes and negative others....mostly the ANA. When my ANA was high I was in so much pain but after treatment for the inflammation or pain my bloodwork went to normal and has stayed that way.

You mention that you feel like you always have the flu and your tired. Have the docs ruled out fibromyalgia? It is sometimes a crossover disease for people with other autoimmune problems. Feeling like you have the flu and overwhelming fatigue is the way a lot of people describe their symptomes. I do have fibro and Hashimotos (thyroid ) and of course all the up and down, do I have it or not, lupus issues.

By the way Dr. Wallace wrote a book on Fibromyalgia also, I have been reading it lately as well. I keep both his lupus and fibro books next to my comfy chair.

Glojer

teresacar · 07-27-2008, 06:14 PM

Hi Veej, thank for your response. Sorry I took so long to respond, I have not gotten a copy of my labs, I will ask for them when I see my dr in August. I know for sure he ordered a c3 and c4? I'm pretty sure that's what it was and he said those were normal, which he had said he was concerned with those results in the beginning. I'm going to try not to worry and think so much about it, because for the past three months my life and my thoughts have been consumed just with thinking I have lupus or some other auto immune disease. I have given it to GOD but never the less I myself have to do my part, which involves looking for answers, keeping my appointments and something very important I stopped doing because I always feel so tired: Exercise again, I used to get up at 2:50am, to go to the gym since I have to be at work at 7am. I really miss being active. One thing is for sure God is always with me and him and my family are the two things that give me strenght to keep going on.

Take care Veej, and god bless u!