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Old Thu Sep 9, 2010, 11:39 AM
Carole in Sudbury Carole in Sudbury is offline
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Join Date: Sep 2010
Location: Sudbury, Ontario, Canada
Posts: 12
Question One episode of MDS and Recovered without treatment?

Hello everyone!
I am really new at this and very nervous that I might not do this properly ...so please bear with me

My story goes like this. On April 31st 2008 9am, I received a call at work from my physician. I was told to go to emerg right away and not to drive. I had been suffering from severe shortness of breath and had gone to a clinic 2days prior,thinking I was having heart problems. The doctor there decided to send me for blood work. I went the next morning. 24 hours later is when I got the CALL.
So I proceeded to call a cab from work and take the 30 minute treck alone with my cabby. I this point I just thought my heart was really not well.
At the hospital emerg, they(the triage nurses) greeted me with a wheel chair sat me down and asked if I felt weak and dizzy etc. They took my blood pressure, my temperature etc. At this point they still hadn't told me anything.
Then an Emerg Dr. comes in to tell me my Hemeglobin was at 61. I still didn't know what normal was suppose to be.
Within 30 minutes I was admitted to hospital and hooked up to 4 consecutive pints of blood. 24 hours later the testing began. First the bone marow. Results didn't show any abnormalities. Right on, no Lukemia(Ithought) Then came the thymus scans and everything else under the sun. I'm sure you all know what I mean. But to my doctors surprise, everything came back normal.
At first he thought that it was AA and probably viral. Therefore I should recover within 8 to 10 weeks with steriod. 80 mg per dose. Ya I was growing facial hair and the whole bit. After the first transfusion my hgb was at 96. The prednizone was not working yet so within 2.5 weeks, I was back in the ER at 71 Hgb. I received 2 pints.
Long story short...that was the last infusion I got.
I stayed on steriods for about 4 months with a decreasing dose. Iwas in and out of emerg for about three full months because my weekly blood would hover around 80Hgb. I was hooked up to receive blood on 3 later occasions only to have the emerg Dr. call it off because the Hgb was around 76.
I had another bone marrow done in August 4 months later. Still normal. But my blood was still just creeping up extremly slowly, therefore the theory of a viral indused AA was not possible anymore.
So just to let you know I am fully recovered my Hgb sits at 147. It's been 2.5 years since my "cytopynia" as they call it. It took about a full year to get my counts back to normal leves(120-160)
Only my red blood cells were ever affected.

OK so, this is where I need to know if anyone is like me. I work in mining. Nickel mining actually. I have never worked anywhere else. At the plant we also smelt all sorts of by-products from other toxic industries. The only thing that has changed in my life and environment is that I have not returned to my work place since that April 31,2008.
I have researched the possibility of exposures to toxins being the cause of MDS or AA, but with no findings.
I visited Dr. Buckstein at Sunnybrook in Toronto 2x. The first time my counts were not good ans she classified me as having MDS. A year later, I returned and now I have nothing. She figures in was do to exposures.. I don't want this to go unoticed. It would be great for someone in the medical community to acknoledge this and actually make it a fact.
My workplace has now accomdated me in an office setting. I am not exposed to anything but lint.

Is there anyone else out there like me!!!!!
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