I think my platet count is Okay, It is all the other numbers. My RBC is 3.5 HGB is 11.2 HCT is 32 RDW is 16.9 and MPV is 6.5. What is the Platet count suppose to be?

Normal platelet count is 142-424 (mine is 285). RBC sh/be 4.04-5.48 (mine is 2.85). Normal HGB is 12.2-16.2 (mine 20.8). Normal RDW is 11.6-14.8 (mine 12.8). Carol, if yours is 16.9, it's high, but I don't know what that means. MPV 7.4-10.4 (mine 6.7).

My WBC has gone up & down from a low of 3.9 to a high of 5.2 (at my initial testing). Now running 4, 3.5, 4.2. (Normal 4.6-10.2.) This one worries me some because that's the one that has to do with infections--getting them & getting over them. Right, Chris?

When they first discovered that I had a problem, they did it when they took a pre-op blood test and found my platelet count was at 66. The Norm by the way for a healthy adult is 140 - 400. The lower the platelet count, the less ones blood can clot, and therefore there is always a problem if one has a minor scratch, or cut, I bleed like a stuck pig. I will have a platelet transfusion on the morning of my operation, and also one during the operation. The real problem is internal bleeding, which is catastrophic, and I was in correspondence with another DS member whose Father, (as I recall) died from internal bleeding.

Any major dentistry would require a platelet transfusion, and I now cannot see my normal dentist, and have to go to the MaxioFacisl/Orthodontics specialist for dental work, so I am in hospital if a transfusion is required.

I am surprised that every MDS sufferer does not suffer from low platelet count, I thought the two were intertwined.

I remember that song " Horse and Carriage, horse and carriage, go together like LOVE & marriage...........you can't have one without the other."

My hemoglobin is now at 10.0, and I am told if it goes down to 9, I will need weekly blood transfusions.

I have asked about low copper, but my haematologist rejects it....Will check this out at Kings College London, as they are the UK's experts, and "centre of excellence for MDS"

Sharon,
You asked about my work. Yes I love it. It is exhausting, and invloves frequent trips to Scotland, but it keeps us solvent, and keeps me outy of mischief, and worrying too much about MDS.
Funnily enough my limited walking (Vascular problems in legs) gives me much more pain and worry. I can only walk 50 yeards, before I must sit down and get the blood returning to my legs. But let us see if my operation on 26th February achieves what I want.

After the op, I propose to go to the Gym at least three times per week. This will also help me lose weight, which I want to do.
bibi, and good luck to us all!!!

Chris, MDS is a wide umbrella (syndrome), & each of us may be in different categories. Apparently, yours is one that none of us would like to be in. Mine is a low-risk group, with an expected life span of 7-10 years (well, 6-9 now, lol!).

As to your legs, no wonder that problem looms as more important. Three years ago sciatic pain forced me into a wheelchair for anything but the briefest times of standing or walking (sitting relieved ithe awful pain immediately). I was thinking in terms of being an invalid for the rest of my life. Thanks to a successful back surgery, I'm 97% better now.

If I had to have one or the other, I'd take MDS. So I sure understand your desire for surgery. Your being a bleeder sure complicates things, tho.

Thanks for your comments. I am rated as having "Refractory Anaemia with excess blasts, and am in the Intermediate Risk Grade 2."

I still do not believe the 1.2 years, but this is the time expected for the median number with my level of condition. So it could be several years, or it could be much less. However I am hoping to get a better idea, when I see the experts in Kings College London, and see whether I do get put on a new drugs trial. The downside is I will have to undergo another Bone Marrow biopsy, but as was the case last time, I will insist on sedation. No Doctor is going to drill into me, whilst I am awake, I'd be terrified. Wow! So I await with both interest and trepidation my appointment on 17th February, and will report back as soon as possible afterwards.

chrisjb. Good Luck and please keep us inform if you get on the new drug trial. I am going to ask this Dr at the Clinic I work at, if he could start a drug trial for MDS. As we do a lot of differed trials at the Clinic. I sure would like to try.

Chris, I'm so happy that you finally told us that the 1.2 years is a MEDIAN number. In my case (6-9 years), I look at the 9 & forget the rest! I think you should do at least that.

As to the bone marrow biopsy, I had mine with only local sedation. No, it wasn't pleasant at all, but the pain was of such short duration that I could do it again the same way. Think about your leg pain--much worse.

Carol, great idea. Keep us informed if you learn anything at your clinic.

Yes I too would love to know wwhat the upper limit to life will be, and what is the lower limit, but nobody has told me yet. I try and find out a little bit more with each appointment, and always have a pen and paper, in case my memory slips, which it does from time to time. I quite look forward to my next appointmment, hoping always that the counts have gone up. The downside is that I hate blood tests, and injections, which is a phobia born of having asthma as a child in Argentina, where I lived during the war. Treatment was cupping, three times per week, and two injections at each visit, so my menories of being 7 or 8 years old, have lived with me, and scare the living daylights out of me. Oh well, that is the least of the problems, so I bare my arm, look away, and think of a good glass of Claret, and smoked salmon.

What a great amount of information being shared! I've not checked in for a while cause I was busy planning a surprise birthday party for a girlfriend. Seems these days I can only do one thing at a time. She is one of my friends that is taking me to MD Anderson next week. She will be my ears and brain while there. I can't really focus on much and seems that I don't remember things like I used to. Not certain if it is a cause of the disease or just an overload of what is going on in my life.

I did have a bm biopsy and my doc did not tell me which subtype of MDS I have. I look forward to getting information so I will have some idea of how to take care of myself. I do know that my white count is low and not maturing and I am anemic. My platelets were fine. Does this mean I have the same as Chris but different cells are affected? Karen and I are the youngest of the people in this group...as far as I can tell. We are both 50 but I'll turn 51 this May.

Chris, my biopsy is scheduled for the 18th...I was given a antianxiety pill for my first and yes, it was not pleasant. I asked for something stronger this go round and hope they can accomodate. I'll be driving to Houston on the 17th and will send positive thoughts your way.

My husband will be working in Houston next week so my wonderful girlfriends will be assisting me...then he comes home to stay with our girls. It is great to have friends!

I have a list of questions going and am looking forward to answers. I was never given information about my counts or anything from my hematologist. I don't feel she's helped much. maybe i was her first patient diagnosed with this, I'll ask her after Houston.

Yes, fatigue seems to be the biggest issue with us all. The other issue I have is a really dry throat when I sleep or even just lay down. I drink a large glass of water during the night to keep my throat from closing up. Anyone else? My nails are fine and I've struggled with anemia for most of my adult life.

Thank you all for sharing and I look forward to letting you know what my doc has to say...by the way, he is the Chief of the section for MDS in the department of Leukemia..I know I will be taken care of this go round!

Best to all of you!

Jeni,
I strongly recommend sedation for the biopsy. Its an injection into your arm, and with seconds you are fast asleep, and I woke up with a mask over my face, and felt absolutely nothing. Obviously the styrength of the sedation is all important, but these haematologists should be able to get it right.

Yes I too, have memory problems from time to time, and I too have a constantly dry throat. I guess I drink 2 litres of water per day, there is never an empty glass.

Do give me love to Houston, of which I have happy memories. I used to live just off Westheimer in about 1978, for a year, though in that year I travelled abroad for 9 months.! so did not really get to know it too well.

I guess I've read every page that Google offers on MDS, and I bought a book on the WEb, but it did not add much to the picture. I cannot absorb all the technical details, but I reckon I am doing OK at present, its over 5 month since I was diagnosed, and I do not feel a bit different.
My wife has got used to my need to fall asleep at some time every day, which I do for 1 - 2 hours, and I keep feeling that I ought to set down my wishes for my funeral, but don't think there is a crying need just yet. Yes I AM optimistic, and may I stay so for ever!
However I am not looking forward to my operation on 26th February, cos from time to time these things can go wrong.

By the way if Carol reads this, I do not know how she will get her clinic to trial a medication. That which I hope to become involved in, is part of tis Country's trial of a new drug, before it becomes licenced. Whatever the drug is, I know not, but i'll bet its one you have been using in the States for years. However none of your drugs seem to do much for those prescribed them, and as my Haematologist told me, There is nothing I should eat or drink, and nothing I should not eat or drink. So I live on lots of water and lots of hope.
I guess its all there is. Keep hoping, my fellow MDS Brigade.!!! Love to all. Hugs to all whether sent or not, but this system at times baffles me.

That is one thing that I never asked was how many years I had to live. Now that everyone is talking about it, I guess I will make sure I ask on my next appt on the 23rd. I just thought it was like diabetes or whatever. You take your shots or infusions and you keep going for ever. I was diagnosed just before my 59th birthday and I am not ready to go yet. But I guess no one is. Now I am really scared. I was just so happy as my energy level has picked up for a whole week. I havent done so much around the house after work and on week-ends for a long time. Hope we all do well for a long time. take care

Wow, great responses. It feels so good to talk about MDS to others. After all, who else wants to hear the nitty gritty? In fact, most of the people around me don't even know I have it. I've only told close family & friends.

My hema gives me a flow sheet each visit so that at a glance I can check the ups & downs over a period of time. Each item shows the normal range so that I can see which of my figures are above, which are below, & which is normal. The trick is remembering what the darned things are. I started making a dictionary of terms a few months ago, so I should probably dig it out again.

I sure understand why Chris would want to be knocked out for the biopsy. That's a difficult history of pain, Chris. I'm a big wuss myself.

Jeni, all I know about the white count is that you become more at risk for infection. Mine is 4.2, just below the normal range, & no problem so far.

As to dry mouth, I can't say that I have a problem there. I always drink a lot of liquid, even right before bedtime.

Carol, I didn't mean to bring on the glooms when talking about lifespan. I'm a dyed-in-the-wool realist, so that's the first thing I wanted to know after I was diagnosed. As I've mentioned before, my dad died of MDS at 75, & I'm only a bit more than 5 years from that age now. So I like to think about making the most of every year, & doing things now while I still feel good. Of course, the economy isn't helping with my plans!

We've had rolling blackouts all day, so I got all the messages at once.

So sorry Carol, I did not mean to frighten you, and nor should you be frightened. To learn more than your medicos seem to be telling you do do to Goggler anf type in Myelodysprasia, for there is a great amount of good useful information that all of us should know.

Few of us, will die from MDS, but it does leave us open to any kind of infection, and the eventual cause of death will be something to do with one of our organs, Heart, Kidney, Liver, Strokes or something else. We are more open to infections than the general public, and we have to live with that and take care of ourselves, in whatever way we can.

You must ask your Hema, what levels you are at (there are 5) and what risk category you are in. You may be well behind me in this race I never ever wanted to join, but then I am 73, and you are a great deal younger I think. I am surprised that not everyone suffers from low platelet levels, as I thought this was an integral part of the problems. I know that in general terms, and in a layman's language, our bone marrow, immunesystem and blodd are at war with each other, and one damn thing is killing off something else. Makes sense? Well not to me, and so I just go on as if nothing had happened. I have told all my family, and we are hoiping to have a big holiday together in the summer, but it may not happen. One of the better things about MDS, is that we can talk to each other as we are doing, and we can always find one of us is in a worse position than the others. Good luck to you, get clued up as fast as you can and exercise your determination not to let things get you down. The stupid thing about all this is I do not even feel a little bit ill. Tired yes, concerned I do not cut myself, so I keep out of the kitchen, and otherwise I just carry on as though nothing has happened.

Hi everyone, I am new to this support group. I am a caregiver for my mother during the day. She is in the late stages of MDS. I thought I might find some answers, inspiration and hope in this forum. I hope that it's ok with everyone here that I joined, even though this disorder isn't directly happening to me.