Does this guy know what hes talking about for MDS?

Posted by tascamman @twitt1949, 1 day ago

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I just happened to come across this guy and he seems to know about MDS, but this video is 10 months old. Is there any thing that has changed since this video was made or is there anything else he should have mentioned. This stuff is still way over my head and since I'm talking with my doctor in 3 days if this guy is legit, my can use what he says to ask my doctor questions. Any input is appreciated.

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Profile picture for tascamman @twitt1949

I just happened to come across this guy and he seems to know about MDS, but this video is 10 months old. Is there any thing that has changed since this video was made or is there anything else he should have mentioned. This stuff is still way over my head and since I'm talking with my doctor in 3 days if this guy is legit, my can use what he says to ask my doctor questions. Any input is appreciated.

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Hi @twitt1949 I watched the video…nothing’s changed in the 10 months since he posted. The doctor’s legit and you can take the information you learned to ask your doctor questions.
In fact, I was impressed with explanation of MDS on the video, the various types and the treatments. I’ve gone over most of this with you but visuals are so helpful in learning! So this was a great tool. I’m going to suggest this to @asarnesejr to watch as well!

Let me know how your appointment goes this week!

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi @twitt1949 I watched the video…nothing’s changed in the 10 months since he posted. The doctor’s legit and you can take the information you learned to ask your doctor questions.
In fact, I was impressed with explanation of MDS on the video, the various types and the treatments. I’ve gone over most of this with you but visuals are so helpful in learning! So this was a great tool. I’m going to suggest this to @asarnesejr to watch as well!

Let me know how your appointment goes this week!

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@loribmt
Hi Lori ......Thanks for replying. I've watched it twice and he does make it easier to understand whats going on. He also makes is easier to come up and get questions to ask my doctor. I had a blood draw a couple days ago and talk to my doctor wed.
Lori did I see you had MDS at one time and had BMT? If so, before your BMT was you just feeling weak and tired or were you actually sick and feeling like crap at times? For me if 'm trying to start my lawn more with with a rope (not electric start). Since its the first time starting this spring it was starting hard. I pulled on that rope maybe 8-10 times I had to sit down and take a break. I just couldn't go any more. 15 mins later I could try again. I might be wrong but maybe caused form red blood cells not carrying oxygen to my muscles?

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Profile picture for tascamman @twitt1949

@loribmt
Hi Lori ......Thanks for replying. I've watched it twice and he does make it easier to understand whats going on. He also makes is easier to come up and get questions to ask my doctor. I had a blood draw a couple days ago and talk to my doctor wed.
Lori did I see you had MDS at one time and had BMT? If so, before your BMT was you just feeling weak and tired or were you actually sick and feeling like crap at times? For me if 'm trying to start my lawn more with with a rope (not electric start). Since its the first time starting this spring it was starting hard. I pulled on that rope maybe 8-10 times I had to sit down and take a break. I just couldn't go any more. 15 mins later I could try again. I might be wrong but maybe caused form red blood cells not carrying oxygen to my muscles?

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Hi @twitt1949 I didn’t have MDS but had developed AML, acute myeloid leukemia. (MDS’s ugly step sister) My illness came on rapidly and within 3 weeks time I went from the first obvious symptom to being rushed to the hospital near death. Just a week prior to that I’d been snowshoeing through the forest in deep snow. So this came on very fast.
And yes, during those weeks, I became increasingly fatigued to the point where I had to be carried into the doctor’s office the day of my diagnosis. At the time of my diagnosis my hemoglobin was at 4.7% and my blast count was 85%.
To answer your question, I really felt like crud! LOL. I wanted my husband to call the vet to put me down.

We’ve talked about the fatigue before. If I remember correctly your red blood count is less than the normal range. So with fewer oxygen rich red blood cells in circulation, that is causing the anemia symptoms you’re experiencing with shortness of breath and fatigue.
Make sure you mention that to your doctor though she most like is aware by the blood result numbers.

REPLY
Profile picture for Lori, Volunteer Mentor @loribmt

Hi @twitt1949 I didn’t have MDS but had developed AML, acute myeloid leukemia. (MDS’s ugly step sister) My illness came on rapidly and within 3 weeks time I went from the first obvious symptom to being rushed to the hospital near death. Just a week prior to that I’d been snowshoeing through the forest in deep snow. So this came on very fast.
And yes, during those weeks, I became increasingly fatigued to the point where I had to be carried into the doctor’s office the day of my diagnosis. At the time of my diagnosis my hemoglobin was at 4.7% and my blast count was 85%.
To answer your question, I really felt like crud! LOL. I wanted my husband to call the vet to put me down.

We’ve talked about the fatigue before. If I remember correctly your red blood count is less than the normal range. So with fewer oxygen rich red blood cells in circulation, that is causing the anemia symptoms you’re experiencing with shortness of breath and fatigue.
Make sure you mention that to your doctor though she most like is aware by the blood result numbers.

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@loribmt

Lori, your so funny. Going to the vet. My wife and I cracked up about that. Other than weakness and shortness of breath, I think my feeling so back is from my stomach acid. I've started taking an over the counter pill "Omeprazole". From what I was told it doesn't neutralize the acid it stops my stomach from producing acid. So far its helped a lot as far as not feeling good.

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