View Single Post
  #6  
Old Tue May 8, 2012, 02:33 PM
CatherineJ CatherineJ is offline
Member
 
Join Date: Jan 2012
Location: London, United Kingdom
Posts: 29
It took probably a year for my doctors to take me seriously. I was in and out of the doctor's office constantly, had several UTIs, an ear infection, bronchitis twice, and the flu with a fever of 103.3. My white count was low, but still in 'normal' range. Then over the summer my platelets dropped significantly from 220s to the 80s, but my doctor kept insisting it was just 'stress'.

I moved to London in September, had my blood checked by a GP here and they immediately sent me to a hematologist. I saw the hematologist the next week, they did a full viral screen, blood smear and a ton of other tests that all came back negative.

My first BMB showed hypoplastic marrow, less than 5% cellularity in the trephine and no evidence of dysplasia. The aspirate showed normal cellularity with dysplasia of all lineages. So they couldn't tell if I had AA or a hypoplastic-MDS at that point because the two tests conflicted with each other. I decided to wait a month and a half for the second BMB so I could do it under sedation because it hurt me quite a bit the first time around.

Two weeks after my second BMB, my hematologist said that both the trephine and the aspirate showed trilineage dysplasia keeping in line with MDS. The second sample was also hyperplastic instead of hypoplastic. Hematologist said it was normal for bone marrow to have patches of hyper-cellularity and patches of hypo-cellularity.

So basically from the point where my doctors noticed that my blood counts were low to the point of firm diagnosis was about 6 months. It was my own decision to wait another month and a half for second BMB though.

So you could find that in your next biopsy there may be more cells and it may be easier to obtain a more definitive diagnosis. Obviously your case is complicated by your blood disorder also.

When it comes down to it, I would ask if the specific diagnosis makes a difference with regards to your treatment and the decision to have an SCT. My hematologist explained to me that treatment for AA and MDS are basically the same as you can have either ATG or an SCT.

It sounds like your infections are really awful, I'm so sorry.
__________________
25F, Dx RCMD MDS 1/2012, on wait and watch for who knows how long
Reply With Quote