I forgot to add this. When i bring up our discussion group, here's the url I see:

http://www.dailystrength.org/c/Myelodysplasia/forum/6228791-new-member/lastpage

Wow, I got #1500! Cap'n Chris is smiling at me.

My husband also went on antidepressants after his diagnosis last year.
We're in our second clinical trial and praying that this one will slow down the progression or, better yet, remission.
God bless you all.
Linda

Hey Birdmom.
Mama and I are celebrating 45 years together this weekend (she claims it is really 45,000 very long years) so I showed her where you said to listen to me........She asked why after all those years should she start now

The Rodney Dangerfield of this gang I call my own LOL

Have a great weekend.
Mike

Hello everyone,

I left for NY Sept. 3rd. and returned last evening. I had a great time helping my sister and her husband celebrate their 50th wedding anniversary (Mike, happy anniversary to you and your wife.)
On Monday Sept 12th ended up at a clinic with strep throat. Put on amoxicillin 875 bid. I asked for a cbc...my hemaglobin was 7.9...I thought I would be okay to got back home to MI. My wbc and rbc were somewhat low and my platelets were 36. I am thankful that we weren't in a care accident. For two day my throught felt better and now the last couple days sore again. Today I had another cbc and my platelets are39 and hemoglobin 7.4 two more units of blood. I am not feeling that great tonight. Will be glad when my throat starts improving.

Hi: So glad you were able to join your family for their celebration.
Hope you are feeling better. Seems like you are due for a blood transfusion. take care.

Becky Jean...thanks.

Yes, I had two units of blood yesterday and feel better today.

Rachael, Thanks for all that info...really appreciate it. Blessings to you. Sandra

I was wondering if anyone experiences alot of cramps in their legs or feet. I seem to go through periods where my legs or feet will cramp so badly to the point that I can hardly stand. These sessions last about 5-10 minutes at a times. I usually have this happen 3-4 times a week.. I try to drink alot of water and there doesn't seem to be anything in particular that I have done to bring them on. I don't think it is related to MDS but just was curious if anyone experiences this. I am not on any medication. Just the wait and watch. I go back to the oncologist next month for my checkup and was going to ask him about it.
Thanks & Hope everyone is having a wonderful day!
Janet

Janet,
I definately experienced alot of cramping....feet and legs. Was told by my oncologist that he didnt think they were related to my MDS but he put me on vitamin B6 and B12...both of these help with cirrulation, energy and nervous system. Along with drinking plenty of fluids these seem to help alot. When I do have a problem with cramping....and it is seldom these days....I rub in Topricin....it works really quickly.
Hope this helps!

Jally: thank you for the advice. I will check into the B6 & B12 next month when I go for my checkup. I have never heard of topricin, so I will check into that also. The cramping is no fun! Glad to hear that yours in under control!
Have a great day!
Janet

As you know the blood transfusion is only a short fix. Sept. 8th,1 received 2 units of blood which brought my levels up to 11.3. Havent had levels like that for 2-3 years. Felt good to feel normal for a change. Two weeks later HGB down, 10.3. Plans now to return in two weeks for more blood work, continuing with Danazol in hopes that it will kick in. Doc seriously considering Vidaza or Dacogen. Still says 5 days a week, returning on the following Monday for an injection of Neulasta times 4 months and then evaluate the situation. We see the Doc Oct 23rd and he plans to start Chemo shortly thereafter.

He also recommended we cancel our cruise in February. Therell be another time.

There are many challenges ahead but will deal with them on a day to day basis. In the mean time trying to keep a positive attitude and enjoying each day to the fullest.

I know some of you are dealing with a lot more. Thank you for taking time to share your journey and giving the rest of us a better understanding of this disease.

Best wishes to all.

Janet, leg & foot cramps at night are one of my main complaints. I have no idea if there's a connection to MDS, but it would make sense to me that perhaps the muscles aren't receiving a proper blood flow. For the last two summers I've been unable to do water aerobics because of foot cramping, even though the pool is heated this year.

I've tried all the usual remedies, but haven't heard of topricin. I will also ask about B6 & B12 when I next see my oncologist.

Becky, I'm so sorry about your cruise plans, but I know that your health is #1 priority. I'm doing as much traveling as I can while I can. Just got back from my grandbaby trip (oh, how delightful she is at 9 months!), & will be going to Nevada for my annual reunion with 4 girlfriends next week. I have two cruises coming up--one in October with my daughter & another in November with two of the girlfriends. Traveling is beginning to wear me down, so this may be my most active year.

It is interesting that so many of us with MDS have leg cramps. I have been taking B6 pills twice a day for a couple of months now and it has helped me greatly. They are cheap (around $7 a bottle) at Walmart and really work for me. I also try to drink plenty of water.
Jean

I haven't replied in awhile, but have been trying to keep up the reading. Sorry, Mike that your trip made you so tired. As you said "it was worth it" Take it easy....don't u hate that? I feel that I take it easy all the time.
Sorry, Becky Jean about your cancelation of your cruise.
I was feeling so great...went to my family doctor...no more strept and feeling some energy. Last night my throat got sore again and my energy dropped. After church took a long nap. I feel that my hemoglobin is dropping. Last song at church was "I am going to live so God can use me." Blessings and hug to you all.