Lacking concrete diagnosis

[LeslieLulu]

Hi,
I am new to this forum. So glad to see this site! My history includes 5 yrs of femur pain, debilitating pain at night. Took 4 years seeing MDs to get somewhere. All along my WBCs were slightly low. I asked for a MRI of my femur and bingo. MRI showed patchy low T1 and high T2 marrow signal in diaphysis and metaphysis, both femurs. At the mid-diaphyseal level of femurs, curvilinear bright T2 and STIR signal in the intramedullary cavity. No lesions. Abnormal marrow signal possibly "red marrow conversion".

I went for a bone marrow biopsy. Showed low WBCs, hypercellularity, and fibrosis. They thought myelofibrosis, however, I do not have any issues with my Hct/Hbg, although have had repeated issues with low ferritin and take iron, and oddly enough in the past year after starting a vitamin program, my WBC's after four years of being low, have been perfect. Because my spleen and liver are not enlarged, I am told it is not MF by one MD and another says it is.

My main issue is the darn leg pain. Is there anything anyone can think of that might cause this as the myelofibrosis is not confirmed. I have started having this same type of leg pain now in my pelvis. We just did another MRI and sure enough, my MRI came back abnormal with "red marrow conversion" listed as likely.

Any thoughts? I am so frustrated. I am exhausted all the time and just want answers. Once I know what I am dealing with, I can move forward.

[PamMc]

I'm new too. I'm watching and waiting. I don't have the experience to tell you anything, but wanted to just let you know you will be in my thoughts and prayers. I hope you get answers soon.

[akemwave]

Hello there. No, I have no clue to what it is you describe. What interested me is that with all the time I have spent trying to learn medical terminology and definitions, you posted some things I knew nothing of, until I looked it up.

The level of informed commentary I happen to find herein has impressed me. So.... Could I help?

One thing I do know (who knows, maybe it could help) is that GCS-F (generic Filgrastim, brand name Nupogen) injection, which is used to boost neutrophil production, often causes "bone pain", which is said to be due to marrow volume expansion and/or contraction. The pain seems to pulse with heart beats. So, maybe your pain indicates marrow volume change? Therein may be a clue.

[peggye]

New to this forum as well. My symptoms do not fit anything in the text books but is somewhere in between MDS and AA so am being treated with Revlimid after nine months of cyclosporine showed not improvement. Have been on 5mg of Rev for one week so does anyone have any idea how long it takes for this med to kick in? Have fever everyday in late afternoon, take Tylenol and fever subsides.

[Cheryl C]

Hi Peggy - it might be better to start a new thread as your post seems like a new topic and a new thread headed up "bone pain" or similar might grab more people's attention.

All the best to you and to you too LeslieLulu as you seek solutions. We are all sympathetic and listening on this forum even if we can't always help.

[triumphe64]

Originally Posted by peggye

New to this forum as well. My symptoms do not fit anything in the text books but is somewhere in between MDS and AA so am being treated with Revlimid after nine months of cyclosporine showed not improvement. Have been on 5mg of Rev for one week so does anyone have any idea how long it takes for this med to kick in? Have fever everyday in late afternoon, take Tylenol and fever subsides.

"somewhere in between MDS and AA" In what way?