[Donna]

That’s wonderful news Marsha!!

You must be so relieved and happy.

Donna

[Donna]

Hi lkrumel,
Everyones experience is very different. My mom was doing quite well until probably May/June of last year. It started with extreme leg cramping, bruising. From there her breathing was becoming more and more labored it was very hard for her to take a good deep breath. She was beginning to lose weight because she had no appetite but was always very thirsty. Over the couple of months it became increasingly difficult for her to move around, every ounce of energy to move from one chair to another. She began swelling, as all of her organs were beginning to shut down on her. For Mom, as hard as she fought, it eventually won. She put herself into the hospital the night before she passed away. I’m so sorry to post these details, but I also wanted to know what to expect. but, like I said, everyone is very different. I should also point out that mom wanted no treatment other than her regular transfusions. In my Mom’s situation, I feel she truly made the right choice, because her last year she was able to do the things she wanted to do — she didn’t begin to get very ill until 2 months before she left us.

Take Care,
Donna

[Donna]

Hi Kathy,

Mom had horrible leg pains and was not taking any medication. I think Neil mentioned in a previous post leg cramping and it’s relation to MDS. It was one of Mom’s biggest complaints, she could not get any relief.
Her family Dr thought it was related to calcium, lack there of. Needless to say, it didn’t help.
Hope your dad is able to get some relief.

Donna

[Donna]

Sending positive thoughts your way Jennifer!.

Great news!, you will beat this and be able to get on with life!

I’ll be thinking of you,

Donna

[Donna]

Hi Jennifer, You’re young and very strong. You can get through this. I can’t believe you having to go through this again. I will be praying for you and sending all good thoughts in your direction. Whatever the Dr tell you, you are going to beat this.

Donna

[Donna]

Good Luck tomorrow Barbra.

I can truly feel your pain and frustration.

Hang in there, you and Ron are in my prayers.

Donna

[Donna]

mom age 62
RAEB 2
diagnosed March 2003
passed away August 2004
frequent transfusions only

[Donna]

I’m really sorry to hear that.

I will say a prayer for Bob.

Donna

[Donna]

Hi Sarah,
Mom had many sleepless nights because of the relentless leg cramping, it was very painful for her. I geuss like Neil mentioned, it is common. Nothing she took helped with the pain. The only thing that provided some relief was massage.

Donna

[Donna]

Hi Lola,
I just want to say I really admire your strength and your courage – you certainly have a lot on your plate right now. Those pathology reports can sure put your head in a spin – terms I’ve never heard of, confusing, to say the least. Anyway — I’m so glad you found this forum Lola, no one should be alone to deal with all this crap.
How wonderful you can relax this weekend and just enjoy your grand-daughter’s birthday, Have fun!

Hugs right back to you,
Donna

[Donna]

Hi Lola, sorry you had to find this forum because of your diagnosis – having said that, I think you’ll be quite happy about the wealth of info and support that you will find here. I’m quite surprised that your Dr is so quick to say there is nothing he can do. I think that there’s lot one can do. The one thing everyone will agree on is to find a dr who specialises in MDS and get yourself to a qualified center of excellence — I know there’s one in Seattle. Perhaps you can ask your Dr for a referral. I’m from Vancouver, Canada, here you need a referral you can’t just phone and make an appointment – don’t know if it’s different for you.
You are very young lola — way too young for nothing to be done.
Hang in there and I’m sure others will have lots of info for you.

Take care,
Donna

[Donna]

Hi Pam — Is there anything you can put in the bath (medicated or not) that might provide you with some relief. Aveeno – anti itch etc….
Must be very frustrating.
Hope you’re able to get some relief.

Donna

[Donna]

Wish I could’ve been there to hold my mom’s hand, I got to the hospital 2 minutes after she passed. She was with the nurses.

d.

[Donna]

Hi Debe, I’m so sorry you’re going through all of this.
My mom lost her battle with MDS last summer. I don’t know anything about #’s, I know lots of people here do, I’m sure they’ll be able to answer some of your questions. It’s so hard if you don’t have a dr that is an MDS specialist — can you see someone else?. Especially if your mom is not happy with him and she’s not ready to give up. Look up the Centers, see which one is closest to you, I’m not sure how it works – I imagine you need a referral from her current Dr. The fact that she is his only patient with
MDS would make me nervous, does she know her classification? There are a lot of treatment options, never give up, please, try to see a specialist.

Everyones experience with MDS is different.
My mom’s passing with very peaceful, but she fought a very hard battle. She was a very strong woman. Unfortunatley, her type of MDS was very aggressive. She didn’t see a specialist, I don’t know how different things would’ve been for her had she decided to go that route. My main concern was supporting her with her decisions and loving her.

Take care Debe,
hope you find some answers soon.

Donna

[Donna]

That’s great Kate! — happy to hear that George is feeling better. I know this disease can consume you.
When those lows come you can’t help but worry.

Hope George comes home soon and life can get back to normal for you.

Take care,
Donna

[Author]

Posts