Update on previous post

[Cja1956]

Hello, I thought I’d give you all an update on my post about possible bone pain. Two weeks ago I was in agonizing pain in my lower back and leg. I couldn’t even walk. My husband had to take me in a wheelchair to get tested and I had cat scans, ultrasounds, and X-ray, but they didn’t show anything. My hematologist fit me in and did bloodwork and my platelets were over a million. She ordered an MRI last Friday and found I had 3 herniated discs in my spine. The pain has subsided a lot but I am using a walker because my legs are a bit wobbly and I’m going to an orthopedic specialist next week.

So, here is the strange thing. My hematologist ordered more bloodwork yesterday. My platelets dropped from over a million to 591,000 in a week, and my hemoglobin went from 12.4 to 9.6,and my hematocrit from 37.6 to 29.6. My rbc also dropped from 3.3 to 2.6. Just seems that my numbers have been stable for the last year and a half and now they seem very erratic and I am really scared that my medication stopped working and my MF is getting worse.

Just thought I would vent to my mpn “family” who have always been so supportive.

Thanks.

Cindy

[socrates_8]

Hey Cindy...

Well I am at least happy you found out about your spine and the bulging disc problem, and sorry to hear that you are feeling apprehensive at all about your MF...

Cindy, it could be any number of things giving you a poor blood count, including yet another failing by the collectors etc... I can also suffer from those types of problems, as I also suffer from very poor vein architecture, apparently...

Anyways, first thing I'd do is have the test repeated, and checked to make absolutely certain of the results, (especially knowing your past history w/ your collectors etc)

Please do let me know how it all goes too ok?

Best wishes

Steve

ox

[Cja1956 in reply to socrates_8]

Thanks, Steve! That is great advice. I have a telephone conference with my hematologist on Monday so I’ll see what she says. Thanks for all your support, as usual. You’ve been a great comfort to me through this whole process.All the best,

Cindy

[socrates_8 in reply to Cja1956]

Pleasure Cindy...

[IrishHiker]

Hi Cindy, I hope you soon get relief from your back problem. Dealing with pain can often be so draining and stressful. I imagine the stress of it must impact your counts as well. Here’s hoping that when they settle your back issue that your counts will also improve. Hang in there! ♥️

[Cja1956 in reply to IrishHiker]

Thanks so much.

[Minu68]

No advice, but much sympathy, thinking of you and do hope your blood counts stabilise xx

[Cja1956 in reply to Minu68]

Thanks, Minu.

[hunter5582]

Sorry to hear about the herniated discs, but glad that you know what is wrong. Regarding the discs, there are a number of interventions that are possible to deal with this problem. I have a relative who is a neurologist who favors the more minimal approach to intervening in this issue. Given the rest of what you are dealing with, minimal interventions might be best. Back pain is quite difficult to manage. I hope you find long-term relief soon.

The shift in your numbers could be in part related to the inflammation from the herniated discs. Inflammation can certainly cause reactive thrombocytosis. This might be a piece of the puzzle at this point. There are other possible explanations as well. It may well be more than one thing going on. MPNs are complex diseases and our bodies are interactive systems that can be a hard to sort out at times. I hope the next round of testing will shed some light on what is going on.

Meanwhile do know that we will all be here for you on this stage of your journey. Please do let us know how you get on.

[JediReject]

Hi Cindy , , just catching up and saw your update , , doesn't sound like a bed of roses any of your current situation but esp your discs which I know only too well how painful it can be and I hope you get some joy with the Orthopaedic appt. Regards your counts I'm sure their fluctuations must be part of yoyr bigger picture with what's going on. My Haematologist once said to me long before my Transplant that with my MF I wasn't suddenly going to drop off a cliff with my bloods etc and that any decline would be gradual over a period of time and give us chance to plan. Bearing in mind I'd had it for 9 years then. So with that in mind I wouldn't necessarily put it down to your MF worsening at this point.

Good Luck with your next appt .

Chris

[Cja1956 in reply to JediReject]

Thank you, Chris. That gives me a great deal of comfort.

[jmctrek]

Sorry to hear your leg pain wasn’t just a side effect of the antibiotics. Hope your orthopedic surgeon will help you walk comfortably again, and that in turn will help stabilize your blood values.

[Cja1956 in reply to jmctrek]

Thank you. I appreciate your kind words.