usually on fibro site but.....

I usually post on the fibro site because that (so far) is the only concrete diagnosis I've gotten so far.

tomorrow I see a neurologist because my rheumy thinks that there may be more going on than just the fibro.

I think what is throwing him is that my blood levels go way off the charts whenever I have a "flare".

When I go to the neurologist I will already have the mri disk to take with me and also the blood work from the past couple tests. I am wondering what he may be looking for. I had thought maybe lupus but that is usually diagnosed by the rheumy, right??

I dont have the forms right here in front of me but by memory (or what memory I think I have) I can tell you that my iron was 6.2 (should be 11.5) and my vit d was 11 (should be at least 33) and several other cbc counts were in the "alert" status.

This seems to happen with every flare or because of every flare?? hmmm

Is this something that happens with lupus?? If so, why did the rheumy set me up with an appt to see the neuro?? Any ideas??

I should also mention that I had to have a blood transfusion in Aug. due to all the levels being out of whack??

I know I will (or should) get some answers tomorrow but I just cant stop thinking about it and wondering what it is the rheumy thinks is going on??

I'm usually on the lupus forum although I've only been diagnosed with fibromyalgia, but its my blood results that are throwing me off too. I have a malar rash most of the time but it is mostly mild. My ana is also negative. I have low platelets and low white blood cells... but I did find something interesting on the fibro forum that said sometimes with fibro there is a mild malar rash, I have never heard that before. Right now I'm trying to find a rheumy that sees fibro patients. My mom has fibro and i think she has lupus but she's afraid to get it diagnosed for insurance reasons, and she doesn't want me to either. It's really strange because our symptoms both began when I was four. I had the joint swelling, pain, couldn't move, and positive ana. I was hospitalized but doctors never figured out what was wrong and i got better. My mom started having symptoms shortly after, she was about 24 at the time, but she never fully recovered and is still having problems 28 years later. We wonder what we came in contact with that could have triggered whatever is going on with us. My sister also has fibro, but she is terrified of doctors and her whole life they have not believed her about her pain so she doesn't get any treatment. But I think they would believe her now since fibro is finally being taken serious.

My mom and me were wondering the same thing.Could have been a coincidence. We must have caught a virus or something but whatever it was it triggered something in my mom cause like I said I got better and didn't know I was sick until a routine blood test when I was pregnant (I did have fatigue but there was no explanation for it so I just figured everyone felt that way or I was lazy). I don't remember much from when I was four so I'm just going by my mom's memories and her time line is a little fuzzy. She never told us when we were children what she was going through, I remember her sleeping a lot and I resented her for that but now I understand. She did her best and is a good mom.

KristaM
My grandma has MS and her mom died very young, we don't know why maybe ovarian cancer ( we had trouble finding her real name because my grandma was only three when she died).

I asked about your blood test in a different post, they are way off the charts. Have you found anything out about that yet?

Well, now that I've re-read it, I probably should have wrote that a little different... but I'm glad you were able to decipher it. just to clear it up-- my grandma's mother died when my grandma was three yrs old.

I had my visit with the ent and the neuro this past friday.

1)I have a mass on my left thyroid. the biopsy is the 14th.

2) I get a slew of blood work done tomorrow morning to rule/rule out any connective tissue disorder??

3) after we get these two things settled we will work on iron levels and why they keep falling and the issue with my right eye.

so right now I still dont really know what I have or how and when I will get the results/treatment.