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HughHC
Sun May 6, 2012, 09:24 AM
I have been wondering whether oxygen would help counteract the fatigue that is so prevalent with MDS.

I am not expecting or seeking a cure for my MDS as I will leave that to the research M.D.s, I am merely wondering whether there could be some assistance of relief in dealing with the fatigue factor.

Thoughts?

Marlene
Sun May 6, 2012, 01:51 PM
Have you had your testosterone checked? Also, make sure they check your estrogen levels as well as your thyroid. For the thyroid, they need to check more than the TSH levels. They should check your T3 and T4 levels as well. Many doc/labs are still using older reference ranges for the TSH and miss sub-clinical cases of hypo-thyroid issues.

John takes CoQ10 and mitochondrial supplement from Life Extension. Both support the energy production of cells. He also uses a bio-identical testosterone cream. All made a big difference in his energy and stamina.

All of these, in addition to walking, help with fatigue.

Neil Cuadra
Sun May 6, 2012, 03:55 PM
HughHC,

Fatigue is one of the issues that I've heard addressed at the one-day patient conferences held by the AA&MDSIF. Perhaps you'll have a chance to attend one.

Reading Powerpoint slides from a session on fatigue isn't as useful as hearing and interacting with the medical professional themselves, but for what it's worth you might look over the slides from sessions at two recent conferences:
Beating Fatigue in Bone Marrow Failure Diseases (https://www.aamds.org/sites/default/files/Nail2012.pdf) - by Lillian Nail

It's Like Night & Day (http://assets.aamds.org/pdfs/ShumayFatigue.pdf) - by Dianne Shumay

HughHC
Mon May 14, 2012, 11:12 AM
Neil

Thank you for the suggestions. I can say that I pretty much already follow what is laid out in them. I exercise regularly, i.e. 30 minutes of stationary cycling each day, weight bearing exercises three times per week, go for walks and outside work in the yard. However, my endurance remains poor and I find it difficult to get moving. I started the indoor cycling as therapy following a total knee replacement, then began slowly adding the others.

I do use Vitamin B-12 lozenges and while I do feel some benefit from such am not sure whether the effect is psychological or physiological. WHile it probably doesn't matter in the final analysis, it would be nice to know.

My thoughts in this area led me to wonder if using oxygen would help the red blood cells carry more oxygen to the body thus possibly aiding in combattijng the fatigue.

milliken2
Sat May 19, 2012, 11:34 PM
Hugh;

From what I know about red blood cells and hemoglobin - and what I am learning about MDS - O2 therapy may or may not be useful. With MDS - if you have blast cells to any degree - they are already compromised, and whether or not the O2 would help, I am not sure. I do know that I asked 2 of the MDS docs about this, since Earl used to wear a CPAP with O2 bled in. He does not need the CPAP anymore, since he has lost almost 100 pounds ih less than a year. But, I was told that the therapy usefullness would be short lived. In other words - while the O2 is on, you may feel you have more energy - but once you take it off, your O2 carrying capacity will decline due to the RBC's not being able to carry the hemoglobin which transports the O2.
There may be other opinions or answers - but this is what I know. Hope it helps to some degree.

Beth