I guess it's about time

General
1

Hi everyone. I have been lurking for about 7 months or so, now. Late last year I was told I had a positive ANA, plus some other markers that point pretty heavily towards Lupus, or some sort of autoimmune disorder. Once that test came back, my PCP pretty much washed her hands of it and told me she could not answer my questions--a rheumy would. So I did what most rational people do when told they need further testing-- I ignored it...( being sarcastic here... : )

Anyway, though my symptoms were mild...(hair loss being the major one).. I managed to tell myself for 7 months that my symptoms were related to OTHER things. Age, hormones, stress. The only reason I decided to even go back to the doctor now is because my hair keeps shedding.

I go to see a Rheumy in July...(after rescheduling that appt. 8 times or so?) I went and got some labs done a couple of weeks ago.. My CBC blood work has always been hinky--WBC low, usually, for the better part of the past 8 years. Low WBC, high lymphs, low neuts has been my "normal" for a long time..(this according to my doctor--she always told me there was nothing to worry about, since I was not feeling sick. Some people just have low/high levels...) So, while this always was in the back of my mind, I tried not to worry about it. OH...and I was negative on the ANA test 4 years ago.

I know now, from my manic internet searches...(both a blessing AND a curse) that when an autoimmune disease is forming, blood counts can be off--though the markers themselves don't show up yet. This is my understanding at least.

Well...this last blood test I got the call that my PCP wants me to see a hematologist. Apparently not only are my lymphs high, they are showing "atypical"... First time that has happened, is what I am told. Though in looking over my lab work over the past 8 years, this recent set is the only one that even shows a category for "atypical".... I don't know if this is a specific test or if this reading only shows up IF the lymphs are atypical?

I guess people with Autoimmune issues can have abnormal blood works, since our bodies are under attack. My doctor says it could be this, but she also is worried that it could by Lymphoma. So, I went from complete denial to.."It feel like it just got REAL"...in the span of less than a week.

Thanks for reading, and for any input anyone may have? Hope you all are having nice days... : )

2

I certainly feel your frustration! One minute all the blood tests are "normal for you" (that's what I get told all the time) and the next, levels are high and need to be retested. My liver enzymes are the worst at going up and down. The year my enzymes were at their highest was when my gastro dr found i had epstein-barr. Well, ain't that the trigger for all this mess?? (being semi-sarcastic here) I wish I had more for you than just a listening ear, but isn't that what we're here for? Someone to listen, care and understand. Keep on fighting!

3

Hi nates tired mom,

Thanks for posting. Yes, I am realizing that we are the ONLY ones who can really fight for ourselves. We have to be our own advocates and not just accept what we are told-just because it makes us feel better. Doctors can only do so much and in some cases are only willing to do so much!

I had to go in yesterday and get some blood taken for the EBV testing. I had Mono a couple of times in my youth...(25 years ago!)...but doctor thinks we should test anyway.

I now wish I had listened to my gut all those years ago, when my blood counts were abnormal. There's a reason we have standard ranges--and I am now thinking that something has been brewing for years inside of me. I guess we will see...

You keep on fighting, too! Hope you are feeling good today..

4

Hi Ginger,

I had the exact same situation...low WBC for like 10 years. Then one year the platelets dropped; then they both dropped further. Was sent to hematologist who ran a ton of tests and came up with lupus. Was always told that the low count was probably just my normal. Not! You're right that's why there is a "normal" range. Now my kidney and liver counts are off. What next?!

Hang in there... ;-)

5

So, this is going to sound really old school, but it's how I was taught in school about when they do blood counts and look at lymphoctyes and all the other cells. They make a slide of your blood and start in one corner and work their way around the slide counting lymph, eso, baso, neutro, etc. It's basically a giant tally, or that's how we were taught. Then, they count up all their tallies, calculate them to percentages. Since it's under a microscope, they can see if anything is funky looking and it'll be noted. I hope this helps a little. My dad had something atypical in his blood cells and was sent to a hematologist too. They did another blood draw and everything was normal. Lupus gives us some weird blood.

6

I completely understand where you are coming from. I’m my own worse enemy when it comes to my health. My wbc has been low for about 5 years before I did anything about it. Also, my lymphs are low but I have high amount of nucleated rbc? I’m supposed to see the hematologist as well. Lupus can really mess with your blood. Keeping my fingers crossed for you.

7

Hi Ginger

I'm glad you felt comfortable to post, and I'm sorry you're going through so much right. We're here to support you, lend an ear and be here with you.

8

Gosh, this all seems to be a trend with all of us, what the heck-those of you who have gotten a diagnosis and are be treated are so lucky, i am sooo sorry that you are sick and i wish i could take it all away for all of us - PRAY FOR A CURE !!

9

Glad you decided to share with us. It is hard to handle all these things on your own. We are here to listen.

Sending you hugs,

10

another Atypical!! welcome and i am glad you are not just watching anymore!

One piece of advice as another Atypical patient/person....find and you can even ask specifically for doctors that like hard or atypical cases. I actually have had doctors say to me you are too atypical so if you do not mind going to send you a doctor who likes hard atypical cases like yours.

I found some of my best doctors this way....and by asking..once you get just few of these great doctors you will have entire team of them! Right now when all i am meeting are doctors or PA's who do not care, treat me like oh hum, another patient..so not listening, treating me with out respect and really do not care what is best for me.

So ask for those great doctors! I hope that they can find exactly what is going on...and another thing is i found..no news with them is good news! so do not stress if they do not come up with exact name right aways..might take time for them to really see all sides to your diseases.

MOST of all, be very kind to yourself during this time and for year after you are finally diagnosed. Give yourself time to grieve, get to know ins and outs of your body..journal, paint or play music but do something to let it out..worries, sadness, grief.

I hope it is nothing very serious ..just any chronic disease will change your life period so hopefully not life serious...we are all here standing behind you too!

11

Hi everyone. Thank you for the support and nice words. While I wish that none of us had to be here...it is comforting to speak with people that are going through some of the same stuff. ((((hugs)))) to all!

I have been obsessed with searching the internet this week. I can't seem to step away, looking for similar situations and what the outcomes were. Logically, I know I can't self diagnose myself yet I find myself searching for answers. This makes me manic and at the same time gives me a strange sense of comfort. UGH.

I got copies of all of my lab work the other day, and out of 8 CBC counts, 6 of them had high lymphs/low neuts/low WBC. Two of them were "normal"...the last normal one being just 7 months ago. They lymphs/neuts/wbc all were in the normal ranges and no atypical lymphs.

I know with autoimmune, things get wacky constantly, with our bloodwork. Could be normal one day, all over the place the next. I am not putting too much weight into the fluctuating numbers--but of course the new "atypical lymph" reading scares me the most...(makes sense, it's what my PCP is sending me to the hema/onc for...)

To the other chronic low WBC folks--did you always feel like you were sitting on a bomb of sorts? I think I always have, though I managed to suppress it for years.

Siskiyousis: You mention you also came up "atypical"... Was this a sudden occurrence, or ongoing? I agree with finding the best doctors. No matter what the hema/onc. says on Tuesday, I will most likely get a second opinion. Quite frankly, especially if it turns out to be something that COULD have been investigated years ago when my WBC started going low, I will not feel comfortable going to my current medical group if I unfortunately have something chronic to deal with. I mean, this last test would never have happened if I didn't ask for it myself. My PCP never seemed concerned in anyway over my CBC. Shows that we have to be our own advocates more than ever...

Thanks again..