So I shared awhile ago that I continue to lose weight. I had a bone marrow extraction (very painful no matter what they say). I do not have leukemia as my pcp suspected. I have myelosplastic syndrome. It is sometimes called “smoldering leukemia” as it can develop into it. My red blood cell count is way low because my red blood cells die before reaching maturity. Each blood cell contains your chromosomes and on my red blood cells my chromosome number 5 there is a defect. I was apparently a perfect candidate for this because I was treated with Novantrone as my first dmt. Then Tysabri for six years which was always coded by the insurance as “chemotherapy”. This basically set up the perfect storm. At this point I will not get treatment, but constantly have my blood count checked. If you are not familiar with Novantrone, it is a harsh chemo which can cause severe heart problems and cancers. If I had known better, I never would have gotten it. You can only have a small amount in your life it is so nasty. I had half of my allowed amount. So that is why I continue to lose weight! I have been told I can no longer live alone, trying to sort this out. Love to all, by the way, I love Missouri, Kelly xx
Myelosplastic Syndrome: So I shared awhile... - My MSAA Community
Myelosplastic Syndrome
Kelly, I know that you are probably in shock but stay positive. You are strong and can and will handle whatever comes in your future.
We are all thinking of you and sending our hearts and good wishes.
❤️🙂
Hi Kelly, thanks for the update. Sorry about your dx, please keep us informed as to how you arrange to live and how you go on. How as this condition affected your ms? Pleased you like Missouri, keep in touch, hugs Jimeka 🤗
Jimeka I have noticed an increase in fatigue, did not think that was possible 😊. Also, do not think it could be related, but my feet hurt so bad I can hardly walk. Trying to stretch them thru the day and wear foot only compression socks. I have to take iron for anemia, and b-12, d3, calcium. Trying to eat more, nothing tastes good. Thanks to all. Love, Kelly
Kelly, I hate to hear this, but I'm grateful that you let us know. You've been through so much already. You face everything with such grace and strength, and I know you'll do the same with this.
I hope and pray for healing and that you can remain in your new surroundings. Wish I had a spare room!
Please keep us updated as to how you are.
I hope everything get better for you soon. Stay strong and positive 👍🏼
Kelly my prayers are going up for God to protect you & keep you. Mary
Kelly,
I'm sorry to hear this but glad you finally know what is going on. Is there something that can be done now to help you gain back the weight you keep losing? Keep us updated when you can.
Jessie
Sending you hugs 🤗 and warm healing thoughts 💕
That’s one heck of a side effect. I’m so sorry. Thanks for sharing. Take good care of yourself 🧡
Kelly thanks for the update 👍. So sorry things have gone so badly 😢. Hope you can get it figured out and get feeling better soon 🙏😉. Glad you like Missouri 👍. Prayers are with you 🙏. Ken 🐾🐾
I’m so sorry to hear this dear Kelly you’ve been thru so much already but you continue to carry on regardless. I’ll be praying that God sends his healing grace to heal you.🙏🏻🙏🏻🙏🏻🙏🏻.
Stay strong my friend
Love ❤️ Donnie
Sorry to hear about your diagnosis. Is there anything the docs can do to reverse the effects or at least stop them?
Sweet Kelley, so sorry bout dx, but keep your head up! & there is a new all natural weight gainer pill out there, th@ will help us weight losers,
Cb1weightgainer.com i think it's called, i too wish i had an extra room, glad u love Missouri!👍👍
Also, any organic Beet juice, Beet sugar, really purifies the blood & helps us gain more red blood cells! We L💗VE YA!
V.xxooo& many Prayers🙏🙏🙏
Jazzy🌹💜
I'm really sorry to hear of this Amore55, most of these MS Drugs are just recycled cancer drugs they don't use for cancer anymore. They rename them and triple the price! They are just killing the immune system and hoping it also slows down the MS flare ups!
Good thoughts and prayers sent your way!!!
Kevin
Kelly, Thank you sharing your experience with me. I really appreciate the information and the personal experience. It makes feel better, unfortunately, to see that I'm not alone going through this horrible side effects experience. I wish luck success if you find and can or using a new DMT. I wish you much success wish the MS and the Myleoid Plastic Syndrome it can be grueling. I know from personal experience, my mother in law has it. If you have any questions please hit me up. Wishing much success and a much love! Luvpup (aka Jen)
My love and prayers are with you. May the Angels Watch over you and keep you safe and strong.
Do you think the novatrone caused that. Im sorry you are in my prayers
oh my, how shocking to hear,it literally make me look up and say what now and why?i do still believe in miracles, I have seen them happen....let us know what's happening
I pray you have the strength to keep going and enjoy the good days. I also started with Novantrone. I had 4 of the 12 dose maximum. I am now on Ocrevus. MS sure can screw you up.
Prayers for your strength & courage and faith. I cringe at side effects the way they roll off the tongue.
From this thread know all hugging and praying for you. Make sure drug manufacturers get this info. I thought they had to list it. You had 2 heavy duty drugs.
Peace
I’m sorry Kelly for your dx. Your spirit of strength is shining through clearly. God bless you.
Stay strong. I’m sorry you are going through this. We are here for you
Oh my, and oh no 😭 You just got to where you were going!!! 😩 I know you’ll figure it out, but I am so very sorry your new life is getting a rocky start. Lots of love to you 💜
I am reading this AFTER I replied to your other post. You are getting it looked into and I hope they will find a treatment for you. Stay strong.
My positive thoughts and prayers go out to you, always, Amore55
Oh my... If it's not 1 thing it's 12 others. Do the best you can and know that there is a lot of love on this site for you. I hope this helps you to feel uplifted.
Kelly, so sorry to hear the news. Do try to keep a positive attitude if you can. Try to find things to be thankful for. Prayers going up for you.
Progress Report On My Wahl'S Diet!
Raynaud's Syndrome!🥶☃️Beware of the cold!
Phone call from Neuro!!
