Myelodysplastic Syndrome and Sjogren's

Welcome to Connect @suetex There are several members in the forum who also have MDS. I’ve posted a couple links below for you with some of the current discussions from these members. I wasn’t able to find references to anyone having both MDS and the autoimmune condition of Sjogren's.

>Living with MDS
https://connect.mayoclinic.org/discussion/living-with-mds/
With @momz @rrivory @lorieafoote and other members who have MDS.

>MDS (myelodysplastic syndrome)
https://connect.mayoclinic.org/discussion/myelodysplastic-syndrome-mds-1/
With members @5qdeletion @cybears @jaylevel1 @esperanzam @lithuanian @kjjjrader and @ikampel2

There are also quite a few members with Sjogren's. The symptoms can vary widely for this condition. I’m sorry you’re dealing with a double whammy.

How long have you had MDS? Are you currently in any treatment program?

My MDS was discovered in a bone marrow biopsy I had done last March. I was asking my oncologist (had him because of breast cancer which is in remission) why I had low platelettes. He saw that I also had high monocytes, and had those for a number of years. Test showed two mutations and diagnosis was MDS. He monitors my various levels and is presently trying (unsuccessfuly) to raise my RBCs which are low but not a bother yet
Sjogren's can cause cytopenia also so who knows? I am going to IVIg treatment every 3 weeks for the Sjogren's neuropathy but I suspect I need a course of Rituximab as my fiber counts are zero. Yes, I am complicated. My Crohn's seem to "gone away" after about 50 yrs and no one talks about my PMR. It seems far down the list.

My husband was recently diagnosed with MDS. Does anyone know of reasonable townhomes/apartments/condos rentals close to the Rochester Clinic?

Welcome to Connect, @cancerwarrior. There are quite a few conversations in the forum for situations just like this…needing longterm housing in Rochester for treatment. I’ve posted a link below to the most current discussion so hopefully be able to get some good ideas places to stay.

Long-term lodging options in Rochester while in cancer treatment
https://connect.mayoclinic.org/discussion/long-term-lodging-options/
With your husband’s MDS diagnosis, will he be having a stem cell transplant?

Thank you. Yes, chemo and stem cell transplant.

Rochester is my home away from home. My husband and I relocated there for the 4 months I was there for my stem cell transplant, 5 years ago. I’m assuming your husband is having an allogenic transplant using a donor’s cells. There are a number of us in the forum who have had the same experience and we’re here for you and your husband to help answer any questions you might have.
This is a link to a discussion I started a few years ago that you may be interested in joining.
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
I know there’s a lot of decision making flying at you right now. It can feel overwhelming but it all falls into place. Your husband is in the best possible hands with the BMT team at Mayo. They are amazing life savers!
Do you have any specific questions at this time?

Thank you. I’m glad you are doing well!

Hi all
I just joined and I have MDS. It is believed that I may have sjogrens too by my symptoms only so far. I understand that a firm diagnosis is made by having a lip biopsy. I also am hypothyroid and have the MTHFR genetic snip.
I live in west Los Angeles and again just joined today.

Welcome to Connect @sjjs You popped into the perfect support group with members like @suetex who also have MDS and Sjogren’s. How long ago were you diagnosed with Myelodyplastic Syndrome? Are you on any treatment program to slow the progression?

Hello Lori, Thank you so much. I have been anemic for a very long time and was told it was idiopathic. It was not until I saw a hematologist and a resultant bone marrow biopsy that it was confirmed. For about the last year, I've been taking the EPO injections every 4 weeks. The concern now is that some of my red blood cells are becoming tear-shaped. I am going to see Dr. Casey O'Connell at USC Keck on June 4th. Regarding Sjogren's, I have had dryness throughout my body for over a few decades, so we are suspect but not confirmed. I did have one blood test 2 years ago, and it was negative. I just had my rheumatologist in LA run it again and a complete autoimmune panel. I understand that a lip biopsy is the determining factor, but I am not ready yet. I have studied medicine, especially nutrition, for over 50 years, having a son, Jason, with a rare genetic metabolic condition. Our story is on fiberwater.com on the history link. My sig other has CLL and prostate cancer. Thank you again, Lori,