Bone marrow bx sched for this Monday....

Hi all, well today my counts are back down to 73000 and my hema has sched my bx for monday so, in the last month- counts have been 61, 69, 69, 82, and today's is 73. I feel like this is happening way too quickly, but at the same time I need piece of mind and feel like this is the only way to get it. I don't know what to think at this point. All other counts are still normal. I feel frustrated, sad, scared and I don't know if I should go thru with this or seek another opinion. I just left a msg for my primary MD to discuss this with him as well. I also have a vacation planned to Mexico in 3 weeks and need to know things are ok before I leave. Otherwise I will be a basketcase.

Any advice would be helpful right now. I don't know where else to turn.

What is happening too quickly - the bone marrow biopsy? Mine was done shortly after I went to the MD because I looked like I had been beaten up in a back alley with a 2x4.

All my blood work was fine except for platelet count.

I think you just gave yourself the helpful advice you are seeking: "I need piece of mind and feel like this is the only way to get it" .

Your right Melinda, I know what I need to do, just wondering why so many docs approach diagnosing ITP so differently. I also have absolutely no symptoms at all--which makes it harder for me to believe there is anything wrong in the first place....

Nothing is cut and dry with ITP. The only thing for sure about ITP is nothing is for sure.

I was told I had ITP right away, guess it would have been after the bmb but to be honest I don't remember since it was 1989.

Once my count started to come back up I had no symptoms either - certainly didn't have any when I was in the 70s or 80s, probably not upper 60s either.

Where are you going in Mexico?

Luckily, I've never had symptoms....primary found it on routine CBC.

We are going to the RIU Palace in Puerto Vallarta.....kind of a delayed honeymoon so to speak.

What fun - you will have a great time!

We moved to Tokyo a couple months after I was diagnosed and on 60m of prednisone.

Jenna:

All I can tell you is that for a person with ITP, you have had pretty good counts. A person could live normally with those counts and if they stay in that range, you'll be fine.

Doctors are different based on what they've learned, what they've read and their experiences with patients. A doctor who attends conferences and has a lot of ITP patients would be much different than one who is not well versed re: ITP and has few ITP patients. If you are feeling nervous about all of this, get the biopsy and move on. Peace of mind is a great thing. If you feel that your doctor is causing your anxiety, get another opinion.

If you have no symptoms and feel good, that tells a lot! You just have lower than normal platelets right now and that alone is not cause for alarm.

Sandi you always have a way of talking me down from the bridge! lol...and for that I thank you!
I wouldn't say I'm uncomfortable with the Dr, I just do not feel like he is super up to date on his ITP facts(lol, cause I'm an expert, ya know!). He flat out told me today that he needs to do the bx to diagnose me with ITP....kinda contradictory to what I've read recently. He also quickly dismissed me when I asked his to check my Vit D and B12 levels. He said that was irrelevant to ITP (although I have read that deficencies can trigger low counts).

SO I guess I'm more afraid of the results than the actual procedure....but am praying that all goes well and I can finally but this stress and constant worry behind me...for now!

I was the same way - more afraid of the results. It was one heck of a long week, but all was fine, fine, fine.

I was just thinking about Vitamin levels today and how hard it can be to have someone monitor that. I've struggled with low potassium, low magnesium, low B-12, low ferritin and low Vitamin D. One it's discovered, I'm treated, but no one is ever willing to work with me to keep the levels up. I'll go months waiting for the next doctor appointment suspecting that something is down because of how I feel. No one takes it seriously and it really affects my ability to function. Or, I'll be at the very low end of the reference range and they will tell me it's fine. NOT! Do some reading and you'll find that low ends are usually not acceptable for normal function. I could write a book.

Keep pushing. Even if it has nothing to do with platelets, it's still good to know that your B-12 and D are in normal range. I wish I'd caught mine sooner before the damage was done.

I'm seeing a new doctor in a week, a musculoskeletal specialist and supposedly, they check all of that. It's a center that does rehab - I'm past physical therapy. I'm at a point where I've lost so much muscle mass that I shake picking up a coffee mug. I've fallen four times in the last few weeks, have numb feet, my arms go numb, my muscles are so stiff and painful I can't move, the list goes on. I have zero quality of life. I spend a miserable day at work and that's all I can do in a day. Why do you have to get that bad for someone to take you seriously? I already have five specialists that I see and not one is willing to check Vitamin and electrolyte levels on a regular basis. I'm pushy too, and still don't get anywhere. So anyway, learn from my experience and push harder. From what I've seen here, a lot of people have low levels of something. Stay on top of it.

Sorry for the rant. I hope someone benefits from this.

Sandi you have honestly brought tears to my eyes. I know I hardly know you, but would have never guessed you were feeling so ill by your positivity and support. Sounds like you have been thru a hell of a time. I pray that this doctor can bring you some comfort and answers.
I see my primary on April 12 (4 days after I return from vacation...my platelets should be nice and interesting then....lol) and am going to ask him to test my vitamins, etc. I had borderline low vit D last Feb. I took supplements, but since I was feeling fine, I ended up forgeting about them after a while. Who knows what my levels are now. And I don't ever recall having my B12 checked. I will certainly take your advice and will keep on pushing- you are certainly an inspiration. I am learning to be my own advocate and to follow my feelings. I know that I cannot trust everything I read online and am trying not to be THAT "crazy" patient, but I also feel I can learn from others' experiences, which is why this site has been monumental for me. I NEED to know that others have been thru this--that my feelings are valid and that I WILL be fine.

ps feel free to rant anytime--as long as I get my turn! lol

<sending hugs and prayers your way>

Sandi, wow that's aweful what you're going through.
You're one strong lady!
I would have gone nuts already.
We have alot to learn from you.

My doc is opposite from jenna's.
He doesn't want to do BMB & just want to wait & see.
Asking me not panic over low platelet count.
I'm worried over his too calm attitude.:S

Lindy, Can we trade?!?! lol---in one breath he tells me we have to do the bx to rule out cancer etc, in the next he's joking with me telling me not to worry and that he is confident everything is fine..man the roller coaster ride in those 20 minutes is crazy!! How can I possibly not worry?!?! He is driving me NUTS but I appreciate his thoroughness (I think). In a way I think its his way of trying to ease my fears and prove to me that everything will be ok. I kept bringing up leukemia--and he said "well if you are so worried about that, let me do the bx and that will be your proof". I guess he is right?
Your doctor's approach seems to be the norm--seems like alot of drs favor the "wait and see" approach. As long as your counts are safe, I don't neccessarily think that as a bad thing. Like Sandi said in a previous post, low platelets alone are not indicitive of cancer.
I will be keeping you in my thoughts Lindy. Please keep us posted on your progress!

Follow up on the D, seriously. Low normal is not okay. Read about it. It should be above 50 or you risk losing muscle. Here's the kicker for me: It's a known fact that people with Lupus usually have low Vitamin D. I'd taken 800 IU's a day for years, and just assumed mine was fine. The Lupus Center I go to is top notch, they even have a research study about Lupus and Vitamin D. So does my doctor suggest a test? No. After 3 years of seeing her, I finally asked. Turns out my level was 18. I get a prescription, then wait 4 months to retest. At that point, it was 20. I get another script. It went to 23. That was 10 months ago. I haven't been to see her since because the office kept rescheduling me. I finally e-mailed her and asked her to order some blood work because something is wrong. I went on Monday for that, so we'll see what the results are. Nearly a year and a half after finding out about it, I'm not much further ahead. There's something wrong with that. I've been taking D on my own, 1200 IU's a day, but I know it's not doing anything.

Okay, this is meant to be funny, but it's true. This is how I realized I lost a lot of muscle. It happened so slowly that I didn't notice, but apparently went on for years. I was in bed one night and realized that my butt was flabby. It was quite shocking. Never before! Then I really took notice and saw it in my legs and arms. When weakness began, I got a real wake up call but still have trouble getting the help I need.

Back to platelets, I like thorough doctors, I really do. But sometimes they can be alarmists so don't let them freak you out.

Yep, some docs can be alarmists....and some can perhaps be a tad overly thorough.
Hang in there.

BTW: A lot of us would LOVE to have counts in the 70k range without treatment! I'd love to have kind of count that WITH treatment.

Haha Sandi, thanks for making me chuckle about your "flabby butt"-although I know its really not funny at all! All this worrying is ruining my appetite lately so my butt seems to be shrinking..oh well--I won't miss it!:laugh: I swear my nerves are my worst enemy....

Relax....stay off the bridge! Sit cross-legged on the floor and say "ooohhhmmmm".

Well, I just got back from the biopsy. I sit here now with a big bandage on my butt and a very dull aching. All in all, it was alittle worse than I was hoping it would be, but hey, it was relatively quick and I survived it, lol. It didn't help that the doc got a dry tap the first time and had to go in a second time. My husband was a trooper and watched the whole thing. He actually could not believe how big the peice of bone was that they took out. I refused to look So now I guess the hard part is over, but waiting for the results isn't going ot be a picnic. Trying to stay positive!!! My bday is Wednesday and I am hoping I can keep this out of my mind long enough to enjoy it.

Thanks for all your support. I will keep you posted!

I'm glad you got through it okay. You'll be sore for a week or so. Keep busy, you'll have those results soon!

My husband was with me when I had mine too. He talked to the doctor the entire time about our vacation. I put myself in my "happy place" and ignored them. The specimen looked like a twig to me.

whew...glad it's over for you. Going in 2x huh? Ouch! they went in 2x on me too, but one was for the liquid and the 2nd for the bone. Do they do both for everyone? Or was I just special! :laugh: I'm believing the results will be clear. My husband watched the whole thing too. Afterwards he said it looked like some kind of ancient torture! It wasn't that bad for me though.

LOl server! I guess they went in a total of 3x then because they did the soft stuff first, then the bone x2. yuck! did you have yours done recently? hope everything turned out fine!

ha! Sandi the nurse asked me if I wanted to see and I said absolutely not!!! I wouldn't even turn around until everything was cleaned up....:sick:

I saw mine by accident. Just happened to look when they brought it past me. I really didn't want to know.

Well, I got my results yesterday after a very difficult week of waiting and all is well! So ITP it is which, for now, means monthly cbcs for who knows how long. Thank you all for being so very supportive during my couple of weeks of panic!! I look forward to sticking around and getting to know all of you fellow ITPers!!:laugh:

Great news!

woohoo! We look forward to getting to know you better too!