Hello - Abnormal Bone Marrow but no diagnosis...Confused...

[PetraD]

Hello

I have been visiting the forum as a guest for a little while as I have had ongoing issues and I hope that you don't mind me posting - I have recently had a BMB due to mixed blood test results particularly over the last year or so - Low WBC & RBC, Low HG readings, Low B12 (was given B12 loading treatment successfully) and WBCs apparently have always run a little "below normal" since 2007 - but only been aware of symptoms for the last 18 months or so - starting with hair loss, constant sore throats, fatigue and light headedness constantly.

4 weeks ago the Haemotologist decided that a BMB was appropriate as even though the B12 levels were within range my MCV was running high and HG was 11.4, WBC 2.7, neutrophils 1.6x10 9l.

The reason for my posting is that when I went back to get my result he said that the BM result was not normal but "No Diagnosis" they did not know why and that he was hesitant to diagnose MDS at this stage because of the implications to me and wants to follow a "watch and wait" treatment.

I now have a copy of the BMB report and they say......

The abnormalities mentioned are;
"Some megakaryocytes appear hypolobulated. There are multiple interstitial aggregates composed of small lymphoid cells and a diffuse population of small lymphocytes throughout the marrow. The reticulin is increased in these aggregates (WHO grade 1) but not elsewhere.
....the lymphoid cells are strongly positive for BCL2 (could be the numerous T cells).......Ki67 positive proliferation index <5%.
CD61 confirms there is an element of dysmegakaryopoiesis with scattered small and hypobulated forms p53 is 5% and weak (modified quick score 3)"

Final Report
"The features are those of bone marrow with lymphoid aggregates which appear to be benign. There is mild dysmegakaryopoiesis, insufficient in itself for a diagnosis of MDS - correlation with bone marrow aspirate is required."

Whilst I do not want to have a positive diagnosis, obviously, and I am a little embarrassed to post this question to you when you are living with a positive diagnosis, but I wondered if any of you had had a similar experience i.e. an abnormal bone marrow result but no diagnosis prior to being positively diagnosed? I would be really grateful to hear any thoughts you may have????

Thank you.

[janetstanford]

Hello Petra
Firstly welcome to the site and i would not worry about not having the same as us ??? we all have the same but different as MDS is an umbrella term for bone marrow disorders of a type(s)
i was told i had MDS then aplastic and now finally after another bi-op its red cell aplasia so not to worry about a title to some extent and most of the time i think 1 or more us are confused at least they have not threw me off the site which is good because i have rather got used to it as a means of support ect
My best advice to your is ring Sophie she can and will help answer questions explain the results and point you in the right direction i am sure a talk to her will make you less confused
Good luck and again welcome to the site

[PetraD]

Hi Janet

Thank you for taking the time to reply - to be honest I'm not sure if its appropriate to bother Sophie in my case - but thank you for your kind words and support in your reply...I think because I feel that my symptoms/results don't fit into a category, if you like, you start to flounder around a bit.

I am due to see my Consultant Haemotologist in June and plan to question him some more on the "abnormalities" but he is definitely a facts and figures man - he is quite closed when you question him on the what ifs etc..( I totally understand that he cannot predict the future or future diagnoses) and just says that he doesn't know what is causing the abnormalities in the bone marrow and anaemia/cytopenia/fluctuating neutropenia & leucopenia levels but wants to watch and wait and deal with any symptoms as and when they may arise....the thought of feeling this way indefinitely is making me very low as I am an active, outdoor person - ( I have 3 horses) and finding the light headedness and fatigue I am experiencing is making my normal day to day duties quite hard at times. I know it could be much, much worse though as so many people on the forum seem to be experiencing.

I've gathered from the forum that this "watch and wait " thing is quite widely used and wondered if any other people had had a similar experience i.e. abnormal results that no one seems to know why and I guess I am also wondering if this is the start of something that may develop over time....

Did your symptoms change Janet or has the condition developed from one thing to another? forgive my ignorance I am still picking up things..

x

[janetstanford]

Hello
Firstly my issues i was first diagnosed with NHL of the bone marrow high and low grade then they blasted it with chemo and i went into remission then over the next 5 years my whites platelets ect grew back slowly except the red cells and i was blood transfusion dependent till the 5th of march 2013 when i was last transfused i am now taking a drug called ciclosporin and so for so amazing i have been going to see the doctor weekly and my hb has gone from 10.4to 11.2 to 11.8 and then the last 2 weeks it has been at 12.2 it has worked so quickly he was not expecting that so whatever immune issue i had the drug seems to have sorted that ( long may it continue)
well enough of me yes i see how you must be still very confused and being tired will get in the way of day to day issues you may not want to bother Sophie but at least you know if you do need to talk and answers to any questions you may have she is there to help and if it helps my doctor is the same facts figures and none of the what ifs or answers but at least hes got me this far ( even if it has taken a while)
Well may hear from you again soon best wishes Janet

[chris]

Dear Petra

Watch and wait is a treatment option for many diseases once the diagnosis has been made. It seems to me that you are watching and waiting for your consultant to come to a firm conclusion about what exactly your diagnosis is.. so that's not the same thing at all!! You have a right to get a second opinion from another haematologist if your current one is not able to make a diagnosis. Not sure where you live but if MDS is a probable explanation, you can check on this site where your nearest Centre of Excellence is and Sophie will be able to support you as well.

Many of us with MDS have experienced delays and errors in diagnosis - I'm sure it isn't clear cut - but it may be worth seeking out a haematologist who has more expertise and experience. They are not all equivalent in this respect. You have a right to have the information you need in order to get to the bottom of what is causing your symptoms and affecting your life so much. Even if the diagnosis might be difficult - at least then you would know what you are dealing with and where to get further support and information.

Good luck with it all!

Chris

[Sarah Reakes]

Dear Petra,

Sorry to read that you are experiencing the symptoms that you are, and that you don't seem to yet have a definitive diagnosis for your abnormal blood counts. Having been diagnosed since June 2011 with MDS with delete 5q, and learnt subsequently that it can take up to 10 years for the disease of MDS to develop to the point where you get a firm diagnosis, I am not surprised your Haematologist has taken this decision. My bloods started to become abnormal initially with enlarged MCV (Mean Cell Volume) which is referred to as macrocystosis and can be a fore-runner to a number of other diseases such as liver disease, alcohol abuse (I don't drink), etc, but it took another 18 months before the rest of my blood counts started to become abnormal and then I had the BMB and that confirmed the MDS diagnosis. I have learnt since my initial diagnosis how difficult it can be to come to a firm medical diagnosis for other conditions when not all the markers/pointers are there. To add to my problems I have other abnormal blood levels (i.e.: elevated ESR) which is normally associated with inflammatory or auto-immune diseases and yet all the other tests they have run to come to a diagnosis has come back negative. I too, suffer with extreme tiredness, but also painful joints/muscles, extreme dry eyes and nose, re-ocurrent painful mouth/gum ulcers, skin irritation, felling very spaced out at times and light headed, and yet none of these have been specifically attributed to my MDS.

I have been to see my Haematologist today for my 4-monthly check and as far as he is concerned all by bloods are holding up pretty well as they haven't changed too much from my initial diagnosis ie: HB: 10.9, WBC 3.3, Neuts 1.3, MCV 104, ESR 71, but my liver function marker ALT/SGPT which is only tested from time to time was quite elevated at 79 and so I am going to have to that retested in 4 weeks time, but he said this could be because I am fighting an infection so not to be alarmed. As I have been feeling so unwell with the symptoms described above, I thought my blood results would be poor and so it was a nice surprise today to find they are not too bad at all. However, I am still left, like you with unanswered questions as to why I am feeling so unwell. My Haematologist has promised to go back to the Rheumatologist I was seeing to ask her advice on what else they can check out on to get to the bottom of why I am feeling so unwell.

Blood disorders really are complicated to give definitive diagnosis on and the only thing I would say regarding your results is that the readings are pretty good and stable and they could stay that way for quite some time. The other thing to remember is that even when one gets a definitive diagnosis, it doesn't mean there is any treatment. I am on 'wait and watch' because my HB is stable and it's not until in drops to say 8 or 9 that there would be any suggestion of blood transfusions, so that is the nature of the disease. I was only saying today to my Haematologist that in many ways I wish I didn't have a diagnosis as there is no treatment, there is the added stress of regular follow up blood tests & appointments to see if my blood levels have deteriorated, and it has also meant that it is now expensive to travel because I have a 'diagnosed' disease and yet it could be years before I actually succumb to having to have any treatment.

My advice is to be content that you have been picked up and are on the 'radar' and that you are being monitored and that they are keeping an eye on you. However, if there are symptoms that aren't being attributed to your blood disorder then go back to your GP and explain them to him and ask him if there is anything else that could be causing them. I found out today from my Haematologist that the codeine in Co-codamol (painkillers) can cause sensations of feeling 'spaced out' which I had not realised. I normally only take two at night but because my pain has been so bad lately during the day I've been taking two in the morning and so this could be causing my problems. Are there any tablets you are taking for something else that could be causing you to get the symptoms you have mentioned? Have you had an infection of any kind? It is so easy for things to get blurred and also anxiety about one's health adds to the problem.

Anyway, I hope this has helped a bit. June isn't that far way for your next Specialist appointment and in the meantime if you are still concerned about your symptoms then make an appointment to see your GP.

Take Care.

Sarah

[PetraD]

Thank you all for taking the time to reply.

I have found your replies very useful and informative - my Husband is of the same opinion as you Chris - to seek a second opinion but my Haematologist is highly experienced in MDS and specialises in malignancies etc and the BMB was sent to Kings (one of the 3 teaching hospitals where he trained, incidentally), he did a report simultaneously and they both agreed, so I have no doubts as to his abilities and trust him.

I think my confusion stems from not understanding what is in front of me - the varying blood test results, abnormalities in my bone marrow, the symptoms that I am experiencing and then someone saying that its not normal but they don't know why!

You are dead right Sarah too that even if I received a diagnosis tomorrow, the chances are the "treatment" I would be receiving with my level of symptoms/results would probably be just the same!! Indeed I am grateful that I am still being looked after and that I am on the radar!

So for now, I have a nice long list of questions for my consultant, I am due a blood test before I see him in June so I am going to see what that shows - chat them all through with him and then come up with a cunning plan.

I wish you all well and thank you so much for your kind support.
x

[Sophie]

Hi Petra,
(and everyone else on the forum),
I peak at the messages every now and then and spotted yours.
Just wanted to say - please always DO BOTHER ME if you have questions.

The forum is great if you know your type of MDS - otherwise you may read things that may not apply to you.
It ends up being like reading up on all types of MDS - when actually only a small portion of information will correspond to your situation.
Many haematology conditions have similar symptoms - and your first goal should always be to get a definite diagnosis.
This may take some time and a referral to a specialist centre if the initial biopsy is unclear.
This can happen.
Sometimes the biopsy results are not absolutely clear - even the specialist's opinions differ slightly.
Sometimes the conditions overlap with one another - and tests need to be repeated after a while to determine which one it is.

Please do not hesitate to call - this is what we are here for - and it may help reduce the anxiety of waiting - a little.

Best wishes,

[PetraD]

Hi Sophie
Thank you for your post, I really appreciate it and everyone has been so helpful.
I will bother you, just a little then, thank you

[Sarah Reakes]

Dear Petra,

I am pleased that you seem to have a more settled approach to your blood disorder and getting yourself prepared for your next Consultation with your Haematologist in June.

Having read my post to you which I wrote late at night after a tiring day, I wish to apologise for perhaps being slightly insensitive to your feelings when I conveyed to you the comment I had made to my Haematologist that day that I at times I would rather not know the diagnosis because of the reasons given, as it didn't come across quite as I had intended. I just meant that sometimes you just want it to go away and go into denial mode.

I think we all deal with things differently but most of us when faced with medical tests etc are anxious to know the results and what's going on, come what may, and I am no different. However, the only problem with that is that we sometimes don't take into account preparing ourselves for the situation when the medics don't actually have an answer. We expect them to know everything, but they are only human and sometimes it just isn't that clear cut. I am in this situation as well because when I went to my GP because I was feeling so tired, and many of the other symptoms I described, I was sent for blood tests etc, then referred to Haematology finally culminating the diagnosis of MDS with del 5q. What I hadn't expected to hear was that none of my symptoms that I suffer from apparently have anything to do with MDS, so I am still left with so many unanswered questions where I appear to have a parallel problem that cannot be accounted for, so from that perspective I really can empathise with your feelings of anxiety and frustration. What I was trying to convey to you, and perhaps not very well, is that the absence of a firm diagnosis at this moment in time, does not mean they won't finally come up with one a bit further down the line. Also as you seem to have been experiencing problems since 2007, the chances are that your blood disorder is like mine and one of the milder forms where they will just 'wait and watch', but hopefully you will get a firm diagnosis before too long.

Because of the elevated ESR which my Haematologist could not account for, I asked for referral to Kings (Prof Mufti) at the end of last year, and they have now concluded that the reason for this abnormal reading is probably due to my MDS, so I am still no further forward regarding my other symptoms.

Unfortunately as we get older, we have to accept changes to our health and sometimes it's not just one thing. I also have a slight heart problem, and have also experienced 10 years of the most awful menopause symptoms so it is a terribly difficult problem for the medics to try and unravel. I have to say that if it wasn't for the fact that at times I just feel so unwell, I wouldn't give my blood problem a second thought because I know I am being monitored and that is some comfort to me.

You seem to be in good hands but don't be frightened to ask as many questions as you can and go prepared otherwise it's another wait. However, my Consultant has said to me that if I have any worries in between appointments, I can give him a ring and I don't doubt you can do the same.

Anyway, just to say, you have had lots of advice and all of it relevant, and it's just a case of you going with your instinct of what's right for you.

Take Care

Sarah