Myelodisplastic syndrome - Leukemia Message Board

Andy's Mom · 03-13-2001, 01:18 PM

My son passed away in June of 2000 with myelodisplastic syndrome, we had know idea he was this sick, he had a rash off and on ran a high feaver in nov of 1999, bus was diagnoised with mono given steriods and antibiodics, this i feel hid his actual symptoms ..would like any info on how soon this disease has to be diagnosed to get help,
his death certificate said he had it for two years could this be.. he was only in the hospital for 8 days before he passed away, Im still in shock andy was a 20 year old very athletic person. any info would help

Luvcarosel · 04-12-2001, 09:41 PM

Iam sorry that you had to learn your son had this for 2 yrs! It's amazing how the medical
practice is. Dr's are quick to say its this or that. It really matters when a loved one has passed away and yet really there is no understanding of the illness they have. It is frustrating not knowing if there could have been some means of preventing his death.
He was so very young. I have never heard of this syndrome. Are there any other symptoms
other than a fever or rash? Did blood work
show anything? I would like to learn more about this. I cannot find anything close to that. Please let me know what you find out.
I myself will also try to ask a Dr. If we can help others and alert them of this deadly
syndrome maybe we can help save someone elses
life. Again Iam sorry you had to suffer your loss in order to make others more aware of this. God Bless and take care of you. I will remember you in my prayers.

newyork200 · 05-19-2001, 01:32 PM

My boyfriend was feeling tired last summer so he went to the Doctor & they ran some test. They call him & said his blood count was low but OK. He would take that for an answer & insisted on more test. They came up with Myelodisplastic Syndrom. Since then he's been to Mayo Clinic twice & is on blood tranfusing therpy. It's all been downhill for him.He's trying everything. Proper diet & exercise, but nothing will help. The Doctors sayh there is nothing they can do. If he gets an infection he will not survive. It's just a matter of time.
Does anyone Know of a anything new that could help?
I am so sorry about your son. He had a whole life in front of him. I don't know if they could have done anything to help him.
I wish we had the answer.
Sincerly

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hypomom83 · 01-14-2004, 08:27 PM

so sorry to hear this about your son......my father n law has the same thing, just found out. i posted about this under blood disorders and never got any replies. we are desperate for info., he is going to university of louisville to start treatments soon. this is an experimental treatment and we do not if it will work.
he has been doing transfusions since christmas and i can't find much info on this disease. any help would be appreciated. and again i am sorry about your son....my prayers are with you.

tabitharasa · 02-27-2004, 11:59 PM

Just found these boards tonight. MDS may be rare, but there are an awful lot of us surfing the Net. Ah, just read the Board Guidelines. Not sure if I can include links to MDS sites that I've been to , so I'll just say this: Check with your Hem/Onc, see if your nearest cancer center has a reference library, ask your oncology nurses, and...

Best wishes,
tabitharasa (diagnosed w/ MDS-RAR [or MDS, type 1-intermediate, depending on which classification system you use] in Sept. 1984 at a month shy of my 16th birthday. Still kicking! )