Abnormal bone marrow - not cancer....

[Jo883]

Hiya everyone

Can anyone help at all? Saw my rheumy yesterday. Had an MRI of spine about 5/6 months ago. No inflammatory arthritis, degenerative changes (osteo) but abnormal looking bone marrow. I asked about this thinking it maybe a patch of it but apparently it's all up my spine. I have to have a repeat MRI to see if any changes it will be roughly 6 months apart and a dexta (?) bone density test to check for osteoporosis. I asked rheumy what could be causing this, she didn't seem to sure but said it can be caused through medication. I've only been on meds for 2 years. Hydroxy, steroids, gabapentin.

Prior to this no meds at all, steroids daily for roughly a year.

I have always suffered mechanical back problems especially since the birth of my youngest who is now 7. But when I'm flaring and it's doing its worst I feel deep aching in my spine (I always said it felt like it was in the core of my spine) with it night sweats and temperatures etc - different feeling to mechanical back pain.

Anyone else out there?? I've read 3 different letters from rheumy, she did get a bone/scan specialist to check my MRI to make sure nothing was missed.

I'm a little stumped and have to wait - I've googled abnormal bone marrow and connective tissue disease and there seems to be a link. Any ideas or similar experience would be gratefully received.

Thanking you in advance

[chrisj]

Not something I know about Jo. I have wide spread osteoarthritis and SLE but nothings been said about bone marrow. I should wait and see what results come back Sorry I'm not any help x

[Jo883 in reply to chrisj]

Chrisj

Thank you for replying

Yep, I think your right, it's always a waiting game, I shall just put it out of my head I think. The osteoarthritis isn't great either! Lol! Anyway, hope you enjoy your weekend xx best wishes xx

[chrisj in reply to Jo883]

Thanks....Let us know how you get on...

[tilde]

I had an MRI of my right leg around the knee area and it show an abnormal bone marrow change.I have repeated the MRI the other day and it still the same .I did the MRI to the let knee as well and it did show the same change, the one to the spine it`s ok.My doctor associate the change to Antiphospholipid syndrome or maybe lupus.At the moment i`m taking 2g of mycophenolate daily,plus 200 mg of hydroxychloroquine and 5mg of cortisone.

[Jo883]

Hi tilde,

Many thanks for your reply. It's interesting that your scan hasn't changed. I've been to see Rheumy - I asked if it was a patch of abnormal bone marrow and she said no and that it's all up my spine (heterogeneous) but doesn't look malignant. I asked what she thought would cause it and she didn't seem sure and said it may be your medication so we will re-scan in 6 months. I went to see my Dr on Monday who told me my steroids wouldn't change my bone marrow or affect it in any way, but that it would only thin the bones. So actually I'm at a loss as to what could be the cause. They have arranged a DXA scan to check for osteoporosis which I'm having in a couple of weeks. I test negative for APS but have levido reticularis and have had 4 miscarriages in the past - I have no definitive diagnosis as yet but sero-neg connective tissue disease

All my symptom seem quite close to lupus but I also have, as yet, unexplained neuro symptoms. I have managed to get a Copy of the write up from scan. Which says the bone marrow signal is heterogeneous and abnormal and clinical correlation with regards a bone marrow disorder is advised. Anyway, they don't seem too sure. it's interesting that yours has been linked to APS/Lupus.

Thank you once again for your reply - it has helped well wishes

[saujohn1234]

Hi did you have any luck with this? I have this in thoracic spine. Also had a biopsy and no cancer. Have pain under shoulder blades and other places in body. Is a rheumatologist the correct person to see? Not a neurosurgeon? Who looks specifically at bones of spine?

[saujohn1234 in reply to saujohn1234]

Have been taking a baby dose of vitamin d . Msm. Collagen. Fish oil and Hyaluronic acid on and off

[Jo883 in reply to saujohn1234]

Hi,

It's usually the person who interprets the MRI that tells the rheumatologist what's what. I was told that because the heterogeneous bone marrow had not changed that it was in keeping with normal marrow conversation. I had to have a follow up mri 6 months after the first. I have to say I have no other pearls of wisdom to give you. They would check your bloods also in conjunction with you scan. I sometimes wonder if it is caused by the meds I take. Then sometimes I think whenever I have complained about/described the pain in my spine - I've always described it as if it was in my bone marrow the centre of my spine. Basically they told me after the initial cancer scare that it was normal marrow convertion. So try not to worry too much. Well wishes J.

[Buffkat in reply to saujohn1234]

My Neurosurgeon is sending me to Hematologist. That is who specializes in this and can rule out Cancers.

[Buffkat]

I had a MRI done because I was being referred for surgery for herniated disc, spinal stenosis that was affecting my ability to walk, so I thought. Turns out I have fractures in L4 , 5 And sacrum at S1, 2,3 but also showing abnormalities of bone marrow with heterogeneous pattern also. My surgeon is referring me to Hematologist, and Orthopedic for fracture. This fracture was sudden, a year ago my MRI was not even near all this, was bulging at L4,5, but not bad. Even had another fracture in a month shown on second MRI for pelvis. I haven’t seen Rheumy yet , seeing him next week. Been on pred 2.5 mg a day and plaquinel for Lupus, and RA. Surgeon had no answers.

[Jo883 in reply to Buffkat]

Hi Buffkat

Thank you for taking the time to answer. I’m sorry to hear of all your going through xx it’s good that you are being referred to a Haematologist. They at least sound like they are on it,which is something in itself. But it always seems like an eternal waiting game.

I was tested for myeloma (twice) as a routine blood test from Rheumy brought something up. Thankfully it wasn’t that.

I was also tested for Hemachromatosis (I can’t spell that) due to very high serum ferritin, and high transferrin saturation. Which was 82% then 54% and then 47% anything over 45 is deemed high. I had the genetic test and it came back negative for HH so advice was sort from a haematologist who then said not to worry when it got down to 47% so I still have no answers. Basically I have high levels of iron which can be toxic to the body as you cant get rid of it. My serum ferritin continues to rise. My Dr says it can be an indication of ongoing inflammation in the body. I am a little disappointed that it seems to still be increasing as over the last year I have overhauled my life. I changed my diet and cut out all inflammatory foods, have gone low carb high fat diet. I have read a lot about this as it helps a lot (Keto) Lost 2 and a half stone to help take the weight off my joints and very slowly started exercising. I just felt I had had enough and needed to try and do the best I could for myself. It has helped - a lot. But yesterday I started to flare, all the familiar symptoms, I do usually flare before my monthly cycle, I have been trying very hard to reduce my steroids and I’m now down to 5 mg which is the lowest I have been for a good while, I have osteopenia in my femur now, prob due to steroids. The drs and Rheumy don’t seem to have any answers for my problems either which is hard and there are such long gaps between appts. I seem to be having muscle weakness in my arms recently which is new. It is a never ending journey it seems at times. Please keep me posted when you see your Haematologist I would be very interested to find out if they say anything about your bone marrow changes. Sorry for the long blathering - I am still non the wiser!! I do wish you the very best of luck and hope they can help get you sorted again. Love and best wishes xxx