MDS Diagnosis?

[Rich]

Hello All,

I’m new to the forum and I am trying to get answers while I wait to hear a formal diagnosis.

I am at Mt Sinai originally for polycythemia Vera. After a BMB and cytology, my doctor feels it’s MDS.

Results show the following:

Moderately hypocellular marrow (30-40) with mild myeloid hypoplasia

Mild erythroid megaloblastoid changes and mild megakarycoytic dysmorphic features

CD71 shows erythroid precursors
MPO shows myeloid precursors
CD61 shows megakaryocytes
CD34 shows no blades

Myeloid/Erythroid ratio 1.5 to 1

Smears hypocellular for age

Erythroid lineage shows mold megaloblastoid changes

Megakaryocytes are adequate with mild cytological changes.

Yesterday’s blood work shows

HGB 32.5 mean above high normal
Basophil 1.2 above high normal
WBC 3.2 below normal
Neutrophil 1.5 below normal

They are sending for more deeper testing and after 4 months no answers yet. I am extremely fatigued, I have constant pruritus, and I have chest pain and shortness of breath to a lesser degree.

I am 40 year old male and I have tested positive ANA for autoimmune. I’m just very confused and thankful I found this forum and foundation so any thoughts would be appreciated!

Thanks,

Rich

[mdsfound]

Dear Rich, Thank you for sharing information regarding your health. Mount Sinai is an MDS Center of Excellence and Lewis Silverman who heads the MDS Dept. there is one of the top experts worldwide. I would definitely consult with him regarding your care. We always recommend that patients with MDS go to one of our Centers of Excellence in MDS for a second opinion. You should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment.

Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. We also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. If this is something that you would be interested in, please forward your mailing address to patientliaison@mds-foundation.org. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/. I hope this information helps.

• This reply was modified 6 years, 2 months ago by mdsfound.

[haider ali]

hi
I hope all of you will be healthy and happy, May God bless you
I am Ali, I am a bit confused about MDS.My father got a bone marrow biopsy done and it concluded that there was suggestion of Myelodysplastic syndrome and we were told to get his cytogenetics done to find out the deletion
upon doing so and receiving the results, it revealed that there was no deletion in 5q,7q and other genes too
It only revealed megaloblastic anaemia
I am now confused that what are we supposed to do next?
can anybody help out?

[Rich]

Haider,

I too am confused. I posted my results and I do not have answers when I started a post on MDS diagnosis. Any thoughts?

[emily59]

Rich – Above the moderator suggests you call Dr. Lewis Silverman. That’s what I would do. I just googled him and found his contact info. I would call and tell them that you have been waiting 4 months for a final diagnosis of MDS and treatment plan. That’s way too long. Say that you would like to meet with him or speak to him for assistance. Perhaps they will give you an appointment with him or someone on his treatment team. Here is his contact info:

The Mount Sinai Hospital
212-241-6756

Good luck.

[Norma DeLong]

I am not a doctor or an expert but am 2 years post an alogeneic (donor) stem cell transplant after receiving an MDS diagnosis. My hemoglobin, white blood cell count and platelet count level were all 3 at critically low levels on the initial bloodwork and the MDS was confirmed by a bone marrow biopsy. Doc told me before the confirmatory biopsy that those 3 low levels pointed to MDS. Good luck.

[Rich]

Thank you Emily. I’m currently under the care of Dr Ron Hoffman at Sinai. I’ll make a call

[Rich]

Does anyone else similar results as mine mentioned in my original post? I feel like 4 months later I should have an answer, right? Are my levels, symptoms and BMB something that anyone had experienced?

[Allan Romriell]

Sorry Rich, my problem has been low hemoglobin and red blood cells. Platelets have been low at times but were normal last blood work in Jan. I have always had ok white cell count. I do have the fatigue you are talking about although its not extreme, just harder to get things done and I need many more breaks and rest periods during the day. Lots more aches and pains also. My diagnosis is MDS-RARS confirmed by BMB in JUne 2017. I do hope you get some answers, this disease is hard enough to deal with even with some answers, 4 months is too long to wait to find something out. I know its a complicated disease from all I have read with many, many variations. Good luck.

[Rich]

Should I be concerned that I am 40 and I’m moderately hypocellular at 30-40% when I should be around 60%? This combined with low WBC erythroid megaloblastic changes and megkarycoytic dysmorphic features makes me wonder after research what I am facing.

[Allan Romriell]

Rich not sure what it means, but it is opposite of me, I was about 80% which was one of the indicators of MDS according to my oncologist. My hemoglobin is low, yours high, my white count is ok but yours is somewhat low, so we may both have MDS but yours is reacting vastly different from me. Does sound like you maybe need a 2nd opinion or maybe a third. Hoping you can find some answers quickly. Take care.

[Rich]

So you are hypercellular as opposed to hypocellular. Yes, very confusing and to wait another month for more guessing is hard to take. Thank you Allan.

[Malissa Kirszenbaum]

Allan, my husband has had anemia almost a year now. His red blood cell, hemoglobin and hematocrit have been counted Low. After checking all the obvious, a blood smear showed abnormal red blood cells. We are scheduled this morning for a Bone Marrow Biopsy. MDS was mentioned by hematologist. He is a bit fatigued (hematocrit indicates approx. 2 pints short). It was explained that MDS is most often “watch & wait.” Does this mean that if he can make it through 3.5 years, his prognosis is favorable to live many years beyond? I hope you are feeling good and your numbers continue to be good.

Lyssa

[Allan Romriell]

Lyssa,
The Bone Marrow Biopsy should give you some answers, like what specific type of MDS does he have(if indeed MDS is the diagnosis). There are many variations in the disease and are rated from low risk to high risk. Many factors go into rating the severity and the BMB should help your oncologist determine this. My specific type is called RARS and is one of the milder forms. Many of my red blood cells have a ring of iron around the outer wall of the cell, a deformity that keeps them from functioning properly so I am anemic with my hemoglobin around 11.8 and red blood cells low and hematocrit around 37%. My oncologist is happy with the slow progress of the disease so far and has said that I could go 3-5 years before any type of treatment. Life expectancy is based on many things, type of MDS, age, and general health of the patient along with others. Every case is different but if your husband is indeed a low risk form and is in good health other wise he should have a favorable life expectancy. The test today should help you find some answers. I wish you both the best and please keep us informed. Sharing your journey with others helps, at least I know it helps me.
Allan

[Malissa Kirszenbaum]

Thank you so much Allan. I am happy to hear that you are doing well and I hope you continue on this path. Sitting in the waiting room and it feels so surreal; scary. Last Thursday, we did not even know where this place was; life can change in 4 days. We will hope for the best until our results. I am happy to have found this forum and it does feel better speaking with others. My husband is 62. His PSA went up to 4.3 in January and his Bilirubin high too. His WBC still within the normal range but on lower side of. His MCV is also a bit high. He also had a few weird back to back stomach viruses (so we thought at the time) and developed A-fib rather suddenly last spring. He is now on a heart med and blood thinner. Fatigue, as you pointed out, is what is most noticeable. I am just preparing with knowledge and information. We have 4 adult children. Waiting for results before speaking with them. Maybe it is something else. 🙏 for all.

Best,
Lyssa

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