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Spouses and Caregivers The people who take care of the patient

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  #1  
Old Sun May 13, 2018, 08:28 PM
Meredith S. Meredith S. is offline
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Join Date: May 2018
Location: Maine
Posts: 5
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Hi there:
My husband, 76 y.o. was diagnosed in Jan. with MDS-Unclassified. He began with low platelets (35) in November and a low white count, which proceeded to fall quite a bit. However, his platelets came up. He had a bout of what we think were cluster headaches for 3 months.....they became debilitating. He got over them with Verapamil. That has been his only true issue even though his white count in April was 1.2 with neutrophils of 0.2. A little fatigue. He received 3 injections of Neupogen back in Feb.
This month his white count came back up to 2.7, his neut. are 0.3, but his platelets are 138. His H&H is normal. He has not had anemia.

He has swollen lymph nodes which were negative on biopsy but are not getting smaller, in 4 months.
So, we don't know what will happen. He is quite active and we feel pretty fortunate. I would love to hear from others who have similar scenarios. It is a little lonely not knowing anyone who even knows what MDS is. Thank you.
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  #2  
Old Mon May 14, 2018, 05:40 PM
bendapk bendapk is offline
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Join Date: Sep 2017
Location: Springhill Fl
Posts: 4
Hi Meredith,

I am 55 and was diagnosed back in July 2017. My WBC are mostly affected. Although at the time of diagnosis all lines were low and I had a really nasty infection on my stomach. Now my HGB is 13, PLTs 150 and my WBC are around 2.5. I am considered low risk and on watch and wait for now. Hopefully that will last a long time. I'm a nervous wreck every time I go for blood work. I don't have any other symptoms right now. I try to eat right and take some supplements. I don't know anyone with this disease either. This disease effects everyone differently. I see your from Maine? I live in Fl right now but have recently sold our house and have just purchased an old New England farm house in Buckfield Maine. Going to do some renovations. We are leaving here June 1st. Feel free to message me anytime.

Brenda
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Brenda age 55 mother of 4 diagnosed MDS 7/28/2017/currently low risk/watch and wait.
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  #3  
Old Mon May 14, 2018, 09:38 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 682
Hi Meredith,
I am just wondering if your husband was ever tested for Lyme disease or other tick borne illnesses.
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #4  
Old Tue May 15, 2018, 07:00 AM
Meredith S. Meredith S. is offline
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Join Date: May 2018
Location: Maine
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Brenda:
Thank you for your reply! I felt like a kid on Christmas when I got it.....and you are connected to Maine. I will surely message you.

Meredith
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  #5  
Old Tue May 15, 2018, 07:05 AM
Meredith S. Meredith S. is offline
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Join Date: May 2018
Location: Maine
Posts: 5
Hopeful

The diagnosis of MDS was made after flow cytometry, BMB and PET scans were considered. The lymph nodes.....could be related to a tick-borne illness I suppose. He walked the Appalachian Trail 6 or more years ago and has tick scars. (!)
Thank you. We will look into it.

Meredith
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