PDA

View Full Version : I am NOT having a blood marrow test!



WantItGone
06-22-2009, 01:46 PM
Lol. I know I'm probably not being a big girl but I'm sorry, I'd rather pray and hope everything works out w/my platelets instead of doing the bone marrow testing. My platelets are low so the hematologist had me give blood around 3 or 4 times. The last time was Friday. I didn't want to do that because I couldn't understand why they couldn't come up w/a diagnosis of ITP w/the last blood drawn. The Nurse Practitioner told me on Wednesday that my blood smear came back saying my low platelets were due to autoimmune issues. I know (from researching) that ITP is a diagnosis of exclusion, BUT if I have lupus (which is actually how doctors diagnosis a person w/lupus often, they have ITP), low white cell count, low platelets, and the smear indicates that it is autoimmune, why can't they confirm at this point that it's ITP. The last results I received today indicating I don't have some type of Gluten thingee. So, last week, the Nurse Practitioner mentioned if I didn't have the Gluten thingee that they'd want to do a bone marrow test. I said nope. :) I know, like I said, I'm not being a big girl. But, I just can't do it. Can anyone give me some feedback. W/all that's known right now from all the blood tests, why won't they just say I have ITP?!

Thanks guys!

p.s. I hope everyone is feeling as well as can be expected!

Leksie
06-22-2009, 02:30 PM
From my experience with ITP, I was hospitalized when they said they needed to do a bone marrow biopsy. I agreed because my symptoms were so sudden (one day I was fine next day I had bruising and a plt count of 2000) and I wanted them to rule out luekemia since Lupus had not been diagnosed at the time. To my knowledge a diagnosis of ITP can only be given if all other possiblities are excluded. What treatments have they tried so far? PDSA.org is a good site for more info on ITP and to ask questions in their forum.

WantItGone
06-22-2009, 03:53 PM
From my experience with ITP, I was hospitalized when they said they needed to do a bone marrow biopsy. I agreed because my symptoms were so sudden (one day I was fine next day I had bruising and a plt count of 2000) and I wanted them to rule out luekemia since Lupus had not been diagnosed at the time. To my knowledge a diagnosis of ITP can only be given if all other possiblities are excluded. What treatments have they tried so far? PDSA.org is a good site for more info on ITP and to ask questions in their forum.

They've not tried any treatments since as you said, a diagnosis can only be given to me after excluding everything else. They ruled out everything now. Thanks for the link. Like I said, I'll take my chances & hope my platelet count doesnt fall as low as yours, and others on here. That's the only way I'll do it is if I'm hospitalized. I'd rather have my spleen removed. :(

mountaindreamer
06-22-2009, 06:55 PM
hi wantitgone,

i don't suffer with ITP so i can't offer any advice...i just want to tell you how sorry i am that you are having to make such a difficult decision. I know you will make an informed decision, and you will do what is right for you, not the dr.

Leksie
06-22-2009, 07:17 PM
They've not tried any treatments since as you said, a diagnosis can only be given to me after excluding everything else. They ruled out everything now. Thanks for the link. Like I said, I'll take my chances & hope my platelet count doesnt fall as low as yours, and others on here. That's the only way I'll do it is if I'm hospitalized. I'd rather have my spleen removed. :(

Having your spleen removed is no fun, I've had it done. It'll put you at risk for so many other things. Like my girl Niecy from Clean House says I think you need to take a big girl pill. The marrow test is not so bad. But is entirely up to you and if they have not started a course of treatment I wouldn't worry about either at this point. Always do what you feel most comfortable, good luck that you don't need either procedure. Good vibes your way...

Monique89
06-22-2009, 07:29 PM
Hey :)
I have ITP, caused by lupus. BUT when i was diagnosed with ITP, i didnt have the lupus diagnosis. In fact the ITP diagnodid led to the lupus...
Anyway, my platelet count was 0 when i found out. They gave me a platelet transfusion, then started me on prednisolone, and i had 3 days of intravenous immunoglobulin.
My hematologist did suggest a bone marrow biopsy if i didnt respond to treatment, as well as the removal of my spleen if my platelets drop once i come off the prednisolone. Trust me, you would rather know what is causing the ITP that not know? And i would think much better than a spleen removal, that has ongoing side effects....

WantItGone
06-23-2009, 05:13 AM
Hey :)
I have ITP, caused by lupus. BUT when i was diagnosed with ITP, i didnt have the lupus diagnosis. In fact the ITP diagnodid led to the lupus...
Anyway, my platelet count was 0 when i found out. They gave me a platelet transfusion, then started me on prednisolone, and i had 3 days of intravenous immunoglobulin.
My hematologist did suggest a bone marrow biopsy if i didnt respond to treatment, as well as the removal of my spleen if my platelets drop once i come off the prednisolone. Trust me, you would rather know what is causing the ITP that not know? And i would think much better than a spleen removal, that has ongoing side effects....

But that's the reason I started this thread Monique. I already have a Lupus diagnosis and have had since '05. You didn't and was still diagnosed as having ITP and started on a treatment regimen, without having a bone marrow test. I don't understand why they can't start treatment and then if I don't respond possibly consider the test. That's exactly what was done w/you. Thanks you guys for all the responses. I'm not taking the big girl pill anytime soon. :( I will talk w/the hematologist today and ask the questions I've asked on this thread. If I don't get answers I'm comfortable with, I'll seek out a 2nd opinion.

Again, thx everyone!

WantItGone
06-23-2009, 05:18 AM
Having your spleen removed is no fun, I've had it done. It'll put you at risk for so many other things. Like my girl Niecy from Clean House says I think you need to take a big girl pill. The marrow test is not so bad. But is entirely up to you and if they have not started a course of treatment I wouldn't worry about either at this point. Always do what you feel most comfortable, good luck that you don't need either procedure. Good vibes your way...

I most certainly do not want my spleen removed. No way! But, I don't want to do the bone marrow test & my impression from my conversations is they don't want to diagnose me w/itp until they've performed the bone marrow test. I wish I didn't have to worry about it at this point but I don't see any other way to look at it... unless that is, I go to someone else & get a 2nd opinion. Hopefully the 2nd hematologist will start me on a treatment regimen & that'll work. Then, I won't worry. Thinking about my platelets abruptly decreasing is definitely something I worry about. I think anyone would.

Leksie
06-23-2009, 05:37 AM
Want it gone,
R u taking any meds for lupus at this time?

Faith
06-23-2009, 10:26 AM
Hi Want It Gone,

I am saying some prayers for you. I hope everythings works out and you don't have to have a bone marrow test. Maybe get a 2nd opinion and go from there.

It's been a while since we talked; I was wondering if you were ever dx'd with Fibro? You had explained the burning pain. I am just curious.

Take care & God Bless,

Faith

WantItGone
06-23-2009, 11:36 AM
Want it gone,
R u taking any meds for lupus at this time?

Hey Leksie,

I am, well actually I was. . . plaquenil. I stopped taking it once I found out my liver enzymes were high and platelets were low. But, that's it. I was on methotrexate for about 3 weeks but that was in the fall of last year.

WantItGone
06-23-2009, 11:49 AM
Hi Want It Gone,

I am saying some prayers for you. I hope everythings works out and you don't have to have a bone marrow test. Maybe get a 2nd opinion and go from there.

It's been a while since we talked; I was wondering if you were ever dx'd with Fibro? You had explained the burning pain. I am just curious.

Take care & God Bless,

Faith

Thank you faith! I was diagnosed 2/fibro probably last fall. I was prescribed neurontin & flexerill then lyrica. I stopped taking the lyrica. I still take the neurontin & flexerill. It has helped w/the burning in my abdomen & back.

I got an update from the Nurse Practitioner today. I don't have the gluten thingee. They need my 24 hour urine sample to rule out something, don't remember what they're ruling out w/that. I asked if I had a diagnosis of ITP as of now, she said "kinda." Lol. She said basically what we'll do is monitor my platelets maybe every month for a few months and if it stays @ an ok level (75,000), I can then have blood drawn every 3 months. She said I don't have to have the bone marrow test to confirm ITP. Whew! So, it's all good. Thanks for all the responses & support.

p.s. Faith, how have you been?! :)

Leksie
06-23-2009, 12:52 PM
I am so happy you don't have to have the bone marrow biopsy done!!
Congratulations, let's dance... :fam21:

WantItGone
06-23-2009, 02:40 PM
I am so happy you don't have to have the bone marrow biopsy done!!
Congratulations, let's dance... :fam21:

Thank you! And, Amen!!! Lol.

Faith
06-23-2009, 02:46 PM
Hi Want It Gone,

I am glad to hear you don't have to have the bone marrow test. That's great. Stay on top of the monitorinng though. I have the opposite problem somewhat Anti-phospholopid syndrome (blood is too thick and needs thinning). Although, I bruise very easily as well. I have a purple, black and green one on my arm where I hit my shower door.

I am so sorry to hear about the Fibro dx. I was really hoping you didn't have it. It seems with Lupus, your system is wide open for anything and everything. My doc put me on Zanaflex 4 mg x 2 at night. It relaxes the muscles and sometimes I can get to sleep. What really helped my back was the temperpedic type bed (Costco Novofoam-$899.00). I just don't want to leave home without it. lol.

I have been doing well and you? We all have our hills and valleys; along with the many challenges this disease brings to all of us. My hubby was laid off in December 08 and we have been paying Cobra ($1200.00) in order to have insurance. Thankfully, he was recently hired and we can start getting back on our feet again.

I hope you have some peace of mind now that you know you won't have to have a bone marrow test. Hang in there. Life is an adventure. God doesn't give us anything more than what we can handle.

Take care & God Bless,

Faith:angelic:

mountaindreamer
06-23-2009, 04:34 PM
i can not remember what ITP stands for, can someone please explain to me? thanks.


Faith, so glad to hear that your husband has found another job....how long do you jave to wait for the insurance to kick in? Will you be able to keep your same drs.?

Danica01
06-23-2009, 05:25 PM
I am so happy you don't have to have the test!!!! That is a pretty scary thing to go through and I happy you don;t have to do it!!!!!!!!!! Hopefully everything will stabilize and all will be well! Good luck and keep us posted :hug:

Leksie
06-23-2009, 06:44 PM
i can not remember what ITP stands for, can someone please explain to me? thanks.

ITP - Idiopathic Thrombocytopenic Purpura

Idiopathic (unknown cause)
Thrombocytopenic (low platelet count)
Purpura (with bruising)

Come to think of it this is probably why they can't diagnose ITP for wantsitgone because the origin is known caused by Lupus. She just has thrombocytopenia.

WantItGone
06-23-2009, 08:07 PM
Hi Want It Gone,

I am glad to hear you don't have to have the bone marrow test. That's great. Stay on top of the monitorinng though. I have the opposite problem somewhat Anti-phospholopid syndrome (blood is too thick and needs thinning). Although, I bruise very easily as well. I have a purple, black and green one on my arm where I hit my shower door.

I am so sorry to hear about the Fibro dx. I was really hoping you didn't have it. It seems with Lupus, your system is wide open for anything and everything. My doc put me on Zanaflex 4 mg x 2 at night. It relaxes the muscles and sometimes I can get to sleep. What really helped my back was the temperpedic type bed (Costco Novofoam-$899.00). I just don't want to leave home without it. lol.

I have been doing well and you? We all have our hills and valleys; along with the many challenges this disease brings to all of us. My hubby was laid off in December 08 and we have been paying Cobra ($1200.00) in order to have insurance. Thankfully, he was recently hired and we can start getting back on our feet again.

I hope you have some peace of mind now that you know you won't have to have a bone marrow test. Hang in there. Life is an adventure. God doesn't give us anything more than what we can handle.

Take care & God Bless,

Faith:angelic:

Hey Faith! waving. I'm so sorry about ur husband getting laid off. Seems like everytime I talk to some1, they're laid off. . . I live in the Detroit Metro Area so it's common place. :( Good thing that your husband was rehired though! I read about the condition you have when I was researching ITP. That sucks that you have it! Neither Fibro or Lupus are necessarily bothering me right now. That's what's weird. I go to do routine bloodwork & come up w/high liver enzymes & low platelets. That's lupus though, huh? :) I'll keep the Zanaflex in mind though in case I do start to experience unbearable Fibro symptoms. I will def look into the Temperpedic bed though. Sounds relaxing!

You are so right, life is an adventure and God will NOT give us more than we can handle. I don't have to do the bone marrow test, so I'm ecstatic. I wasn't doing it anyway, but it's just good that they're not requiring it! :)

WantItGone
06-23-2009, 08:09 PM
I am so happy you don't have to have the test!!!! That is a pretty scary thing to go through and I happy you don;t have to do it!!!!!!!!!! Hopefully everything will stabilize and all will be well! Good luck and keep us posted :hug:

Thanks!!!! Me 2. I will keep every1 posted.

WantItGone
06-23-2009, 08:11 PM
ITP - Idiopathic Thrombocytopenic Purpura

Idiopathic (unknown cause)
Thrombocytopenic (low platelet count)
Purpura (with bruising)

Come to think of it this is probably why they can't diagnose ITP for wantsitgone because the origin is known caused by Lupus. She just has thrombocytopenia.

Well, they actually "kinda" did diagnose ITP. The nurse practitioner said "kinda" when I asked if I had a diagnosis of ITP. :) But, I'm confused as to why you say this is probably why they can't diagnose ITP. ITP is often caused by lupus. It's one of the most common causes.

Leksie
06-23-2009, 09:51 PM
Hey Wantitgone,

I just meant that your case would not be idiopathic because idiopathic means caused by unknown reasons. Your thrombocytopenia would be a result of Lupus. When I was diagnosed with ITP I did not have a lupus diagnosis which made it truely idiopathic at that time. Sorry to hear about the fibro diagnosis but I am glad that your symptoms are not so bad right now.:cute:

WantItGone
06-24-2009, 04:03 PM
Hey Wantitgone,

I just meant that your case would not be idiopathic because idiopathic means caused by unknown reasons. Your thrombocytopenia would be a result of Lupus. When I was diagnosed with ITP I did not have a lupus diagnosis which made it truely idiopathic at that time. Sorry to hear about the fibro diagnosis but I am glad that your symptoms are not so bad right now.:cute:

Thanks Leskie. Actually, they told me it's still called ITP. In fact, after the 1st two tests, they said they suspect I have ITP due to Lupus. I know that I had thrombocytopenia from the beginning because I have a low platelet count, but from what I was told I do have ITP. So, you're saying I simply have TP. Lol. I'm confused.