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I have recently been diagnosed with MDS, and have so many questions.
Blood Cancers & Disorders | Last Active: 5 days ago | Replies (7)Comment receiving replies
Welcome to Connect @mick4sb You’re already getting some great information from @janetlen and @scy
As mentor for the Blood Cancers & Condition support group I thought I’d toss in a few more links of information for you about MDS or Myelodyplastic syndromes.
This comment contains my go-to articles about MDS that I wrote to some other newer MDS members.
https://connect.mayoclinic.org/comment/925760/
The entire conversation is in this discussion:
Living with MDS
https://connect.mayoclinic.org/discussion/living-with-mds/
Here are a list of some questions you might ask:
What type of myelodysplastic syndrome do I have?
Will I need more tests?
What is my prognosis?
What is my risk of leukemia?
If I need treatment, what are my options and what do you recommend?
I have other health conditions. How can I best manage them together?
Are there restrictions I need to follow?
Another good discussion is this one: Your tips on how to get off to the best start with a new specialist:
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
I may be a little biased but the hematology department at Mayo-Rochester is second to none. Mayo is the best! I’ve been on the receiving end of care there and owe them my life.
How long ago were you diagnosed? Which Mayo Campus will you be visiting? Are you set with lodging? Do you have your patient portal set up?
Replies to "Welcome to Connect @mick4sb You’re already getting some great information from @janetlen and @scy As mentor..."
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Thank you so much for your comments. All are very helpful.
I was diagnosed 3 weeks ago. I appreciate your questions that I can use to ask when I get to Mayo. I am in the process of having all of my med records transferred to Mayo Rochester Hematology and Nephrology depts. In addition to MDS, I have CKD along with a complex cyst on my kidney. My Nephrologist has been on holiday and getting her records transferred has been more difficult due to her not being accessible to approve. Hopefully things will move faster next week.
I have my patient portal established. Not sure when I will be going to Mayo, no appointment yet. And not sure where I will have lodging depending on length of stay required.
I live in Santa Barbara Ca, but grew up in Twin Cities and went to UofM. I have lots of friends and family in the Twin Cities, and will try to stay with them when possible. Thank you so much for your kindness.