Hi everyone
I went to the Drs yesterday and got results for MRI scan. I was told that I have abnormal looking bone marrow, but that it didn't look malignant (phew!) I have to have a repeat scan in 6 months. Can anyone relate to this?? Does anyone know if this is a Lupus thing? Thanking you in advance x
Hi jo, it can be an autoimmune thing, I know mine was questioned in 1998, and like you, I had the scare of poss leukaemia. Nothing more was ever said, except I had iron transfusions for 6 weeks. Was at one point going to do a biopsy, but came to nothing, and lupus was dx very soon after.
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Thank you for replying, I wasn't expecting what the Dr said - nor do I know what abnormal bone marrow would indicate - I didnt think of leukaemia because bloods seem to be normal - it's Sod's law that hubby's away on business, I haven't told him as I don't want to worry him! I've had a bit of a hard time with Drs lately - my GP started reducing my steroids I've got down to 10 mg and it hasn't been good. I started to flare, but I get neuro problems also and no one seems to know what the cause is, my legs buckle and giveaway without feeling or warning and I have ptosis and facial droop (looks like I've had a stroke) also my speech changes and I can't link my thoughts to my speech - that and joint pain fatigue, dry eyes etc. I think the Dr was a little taken back and has asked if I've been tested for myasthenia gravis!! Which I have but test was negative. Steroids have been keeping this all under control reducing steroids leaves me in a complete mess. I have also been having the malar rash and by the evening it really is quite red. My blood is not showing anything - in my heart I know something is wrong so I must keep going - dr is now writing to rheumy to get me seen quicker as my next appt was 7 months!!!! 
My GP was the one who decided to reduce steroids.... Lol! Then when he saw me he said who said to reduce your steroids?! Anyway many thanks for your reply - I really don't know what I'd do without this site and all the wonderful people on it!! Xxx
I would not have wanted to scare you with the L word, just thought as cancer had been dismissed, which L is, you were ok, I'm sorry for worrying you needlessly. Yes I agree about the preds, which are all that's keeping me going. You have a lot going on, and must be fed up with it all. Hope your GP raised your preds again ??. Rheumy doesn't know anything, unless they are told, and 7 mths is a long time, so hopefully their intervention helps. I am having a 'mare' with Drs at the mo... May post about it later, to get it off my chest....wish you better soon.
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No you didn't worry me at all - it was the way the Dr said you have abnormal bone marrow but it doesn't look malignant!! I didn't think it was leukaemia because my bloods dont really show anything - I think it just took a minute to go in!! Then I just drove home thinking well what does abnormal bone marrow mean, I just wasn't expecting it and had no1 to discuss it with either. I have been through the ringer with my health and so far I just have ? Sero neg connective tissue disease on paper - 'Lupus like' has been said but nothing definitive - I had to wait for a year before first hospital appt and was just getting ill er and ill-er so had to go private was put on meds which helped but not in time enough before I ended up in hospital. It's taken another year to get to where I am now and for that I am grateful but it's by no means perfect!! I'm really sick of short and rude Drs and long waits for appts and I told my dr this and that I was willing to go private he said it's not good to keep changing and I said well I can't go on like this for another 7 months!! I raised my own preds simply because I need to be able to walk a short distance to pick up my youngest daughter which wasn't happening on 10 mg of pred I will argue it out later I have come down from 15 and have only upped it to 11.5 - I told the Dr of I'm like this in the morning my day will not get any better only worse and I have a family to take care of!! I rely on our short summer for a bit of respite as winter is pretty much a 'right off' for me! I'm sorry to hear your having a struggle with your Dr - mine had me in tears of frustration last time and that's saying something as you learn to have quite thick skin with health problems!! Anyway - I wish u well
xx
It's awful isn't it. I did the private/ NHS juggle, and the private Drs I saw, put me on their NHS lists anyway, so only a couple of consultations to pay for. GP prob don't want to look incompetent, so dissuades you. I have a very negative opinion now, of Drs. Their fault, for treating us in this way. I don't take their word for anything now, and google what they say, as well.
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Im so with you on that!
My husbands aunt has been extremely I'll for 2 years - had every test imaginable inside and out - they couldn't find anything wrong with her - she changed hospitals and has been diagnosed with Hodgkin's lymphoma and is now critical. The same sort of thing happened with my Dad who also died young because of incompetence. I don't trust them and I also research every blood test result and take photos of everything and keep a daily symptoms diary. I psyche myself up for every appt in case I get fobbed off or in case they are rude or short - it causes a great deal of additional stress. I've just had to do Atos forms as they are changing the old incapacity benefit to back to work benefit and I will need to be assessed for work - lol - I wish I could work because it would mean I have good health...... Anyway I can't put a definitive diagnosis on paper - just copied all my rheumy and neuro letters and keeping my fingers crossed!! But it will cause me a great deal of unnecessary stress meantime!! All I can say is onwards and upwards xx
Yes, I have a few horror stories of Drs neglect to myself and others. Psyching ourselves up for appts is true... I'm dx and still do it. I also request copies of test results too. I have only ever had 4 positive ANA results, in 12 years. I only have the copy of one...it is my 2nd line of defence, if a new dr or other, Q's my diagnosis. Regarding Atos, yes, bad enough without all that stress. I had worked all my life and paid my dues. I'm not entitled to anything, cos of hubby's pay. And no, he doesn't earn much... Try to keep smiling...x
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