Finally anxiety got me and made me travel around 1050 mile to see a good hemato-oncologist.He did some tests like abg and etc etc....only to tell that you should go for a bone marrow biopsy.....
I know it will not reveal anything....I know it is something secondary....he is saying once bone marrow exam comes normal,we will look into rare secondary reasons....
My question is why not look into those secondary reasons straight away.....
Going for a second opinion tomorrow....
What do you guys suggest?? should I go for bmb.....I have seen videos on YouTube,it is painful as hell.....so scared....
Ahhhh...want to be healthy again like I was this March-April b4 this stupid stupid thing happened
Hi vipulm12. BMB is not painful, atleast it was not that bad for me. My pain threshold is not very good but still I feel it was not that bad.Stop watching videoz and scary stuff that will only make u more freaked out. Before going to look into secondary things, its safe and better to get a bmb. Do you want to go throufht full body Ct scans, colonscopy, endoscopy, MRIs, ultrasounds etc etc but not for just one bmb. I was admitted in hospital for my bmb in afternoon and in night I came home alone. For one week the site was sore and thats it..dont let the negative emotions and fears let u down. Rise up and face the situation with courage...
Don't worry about BMB they are ok and over quickly - take good advice from an experienced consultant who is being thorough in arranging a bone marrow biopsy to get a proper picture of what is happening with you. Many of us on here had BMB at the start of our diagnosis and will confirm it's ok, all done by professionals well used to doing the procedure, yes some discomfort during and after but well manageable and soon over. All the best
Hi vipulm, Please believe us mustabshra is correct, BMB is not anything like we expect before experiencing it, I have had two of them the first one I found a little uncomfortable but this might have been due to me being tense and nervous the second time it was performed by my Haemo Nurse whom I know well and I felt absolutely nothing as I was so relaxed about it.
With regard to going back I do know how you feel but sadly this cannot be, I was diagnosed with PV Jak2 neg 13 years ago, all you or any of us can do is accept what we have and make the best of it. I am not saying it will be easy but acceptance brings its own peace of mind in time.
Wishing you the best with your upcoming BMB, go for it vipulm12, it will not be as bad as you fear, I would also suggest that you bring a loved one for support.
As others have said, BMBs are not that bad. More of a “discomfort” than actual pain. Mine took about a half hour. I walked to the hospital and walked home after. If the doctor doing the procedure doesn’t say he’s going to do “deep freezing” before the biopsy, ask for it. It will all be fine and over before you know it.
Hi vipulm, please listen to Gary - he’s right, often the fear of an injection or procedure of any kind is worse than the actual event. I have found with Orthopaedic jabs, the more tense you are, the sorer they are. What needs to be done, needs to be done is also my philosophy. Once you know what you have to deal with, then you learn to accept it and you cope. The worry of the unknown is laid to rest and you then start living your life again.
I haven’t had a BMB but had lots of injections deep into joints of all sizes but others have reassured you about the BMB. You need to stop going on net, apart from this forum and MPN Voice website. They are trustworthy sources of information which are monitored so they remain so.
You have taken the first important step by getting expert advice so please get the BMB done, get your results and come back to this forum so you can get the support you need. We are all scared when we are waiting for results or going through procedures, so you are not alone.
Hi Vipulum, just received an email with a cartoon of a lady on her computer. She is saying - never ask google, I’ve gone from a mild headache to dead in three clicks! Think that sums up the dangers of the internet! Kind regards Aime x😺
If your question is should you have a BMB, I would definitely recommend it. It will give you some definitive answers and either a true diagnosis or you and your specialist/ doctor can move onto looking for a secondary reason.
The BMB is just uncomfortable for a short time but definitely worth having.
All the best with your search for a true diagnosis.
Get the BMB! It’s a very important diagnostic tool. The results are invaluable and will guide treatment approach and management. I’ve had two and really both were absolutely fine. In and out within an hour or so. Much worse thinking about than doing. It’s not exactly pain free but it’s entirely manageable. Let us know how you get on. Good luck!
Take the BMB, it’s not so bad, don’t watch youtube vids this is not the reality for most. Try to get it done by someone who’s had plenty of experiences. It will tell haem what you are dealing with and stage it! Be strong and go for it.
Thank you so much everyone....I'll go for bmb this week as soon as my father comes....dr said u will have to bring someone with u....may b due to sedation ig....
Hi I had my bone marrow test done last week. Even I was scared initially but it didn't pain as much as I thought. I did have little pain for the next 2 days but became perfectly ok after that. I even went to work the next day after my BMb test. So don't worry and everything will be ok
Hi vipulm12, I don't really think anyone here can really answer the weight issue as you haven't had a diagnosis yet. You must try hard to not worry yourself needlessly until you get a diagnosis. Fingers crossed the bmb will give give you an answer,one way or another. In the meantime try to distract yourself from the internet & reading these scare stories & only post here where you will only receive reassurance. But you must wait for a diagnosis or the stress will make you ill?. You are in my thoughts vipulm & i'm sure a lot of others on the site. Wishing you get an answer very soon. Atb tina🤗x.
Hi Vipulm12
Do the bone marrow biopsy. It's a must. Not only can it give you the status of an MPN or not but it may provide other valuable data that may relate to a secondary cause. Turn off YouTube, by the time you wake up you won't remember any pain. Stay strong. Anna
Hello, Have the BMB. It's the only way to know what is going on as these diseases all involve a problem going on in the bone marrow. The specialist I saw said that a BMB is diagnostic. The BMB I had was painless. I think we all fear what the BMB may reveal more than the procedure itself, but you should learn what is really going on. Extreme stress can cause weight loss, I've been there. Best of luck to you.
Hi, I would ignore the videos and go for the BMB if an expert advises. It’s not painful just weird and a little uncomfortable at times - but all done in 10 mins. Mine felt like someone sucking a bruise out of my body - odd but fine. I’ve got my second next month and not looking forward to it but equally not too bothered either. Good luck - not knowing is very hard on your emotions, we’ve all been there on this forum.
As far as I’m concerned all they do is run test. A huge money maker. I had 2 different hospitals when first diagnosed one wanted to do every test imaginable the other only blood. Needless to say I stayed with the only blood and one year later am doing well. I have been put on hu every other day with blood work once a month. After 3 months all is well and it’s just nice to give my body a break from that drug. By the way it was me who mentioned trying the decrease really has nothing to loose.
Hi all,
So here is an update.....I went to another hematologist here in my city....he told that he will take hct 50% as baseline of when to go for phlebotomy.....for the last 7 months my hb is stable at 16.2-16.3 and hct at 48 and RBC below 5.5.....
Regarding the itching I was having....it was mites 😂😂.....making assumptions is not good ig.....iam feeling very good....as active as ever.....on daily aspirin.....hope u all are doing good too.....
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Diagnosis update - PV - in limbo 
