Looking for more recent activity on your daughter. With this thread being old, I'm being fairly desperate I know. My 21 year old daughter has a recent MDS diagnosis also. Have you continued with the cannibiods? Have you found any other alternative medicines that have helped with the various effects of both the disease and the treatments? Thank you in advance to anyone with more up to date information.
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MDS sucks
Hi Marlene, I too am getting ready to try CBD to help my MDS diagnosis. It is not conclusive but the medical community does not know how to diagnose my cytopenia. My bone marrow biopsy is inconclusive. My Symptoms are refractory anemia requiring monthly blood transfusions and Extremely low platelets requiring a fascinating orphan drug called Promacta to literally stay alive. I recommend talking to your doctor about Promacta. It is used in ITP an autoimmune disease but more people diagnosed with MDS are using it with good success too. I actually had to tell my hematologist about trying it because i was dying in ICU. My platelets are stable between 50000 and 100000 on the Promacta. I was in and out of the hospital every few months on life support before the Promacta so i consider it a miracle. Some day it would be great if i could get off that too but i will count my blessings.
Regarding CBDs. Here is some good information i have come across i am going to follow. I pray it works. My 10 months on Vidaza was a bust. No improvement. Dosages. http://phoenixtears.ca/dosage-information/ Here is a source that looks pretty good for all the right reasons. I don't know for sure but i like what they have to say. https://www.healingessencecbd.com/po...tem/our-story/ Quote:
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