My docs have asked a favor. I've posted on this forum that my doc gave me a very low dose of Ritalin to help with my brain fog, and it worked really well. In addition to the brain fog relief, it also eliminated that horrible bone pain in my legs. They would like to know if anyone else has tried Ritalin (Methylphenidate) and if they had similar results. They are curious if this is an "off label" bonus that other MPN patients may benefit from. I'm not passing any names on to them, just commentsโฆ read more
Barbara, I felt the brain fog was the most life changing symptom I was having. I couldn't stand it and I was willing to try anything. A lot of doctors still don't believe it's caused by the MPN. But there are an awful lot of people on this site with MPN AND CONCENTRATION issues. We can't all be crazy.๐
Update- I asked my hematologist about low dose Ritalin for my brain fog. She prescribed low dose. I use it just when I need to focus-like when I was developing an online graduate course this spring. It really helped me stay on track and focused.
I'm retired. But I can't imagine handling my financial position while suffering from that brain fog! Just an update...still on the Ritalin 5mg....focus is great and still no return of the bone pain. And it's been several months ๐
Even though so many of us have these brain issues, it seems the specialists can't quite connect the dots of what causes it. Maybe not because they don't want to, they just haven't found the link yet. But my focus issues stated about 18 months before I was diagnosed with the MPN. I went to a great female neurologist that understood what I was saying about my loss of mental ability. She did a full neurological workup including scans. Everything was negative. She said unfortunately when nothing physical is found, they blame it on stress. (I hate that diagnosis!) She said a lot of women just never learn to relax because we run at full speed for so many years. Sure, I can relate to that, but I couldn't accept it. When I saw on this site how many people suffer from concentration issues I was relieved this wasn't a self inflicted mental issue!!! The low dose I take (5 mg) just nudges me to focus. (According to the drug websites, adults can take up to 70 mg for ADHD. So this is VERY low.) I would also love to know if others have tried it and had success with it. I think there are too many movies out there with Soccer Moms and druggies abusing Ritalin at high doses, and it has gotten a bad name. Ritalin was made for focus issues and should be used according to a doctor's instructions. I read an article (medical paper) on the NCBI website that said people under extreme stress may exhibit symptoms similar to ADHD. I found that very interesting. (Not that ANY OF US are under any stress because of our MPN!!! ๐)
I agree. I know I seem to feel a little clearer after my phlebotomy. Maybe itโs the sluggishness of the blood? Maybe poor O2 exchange? My background is laboratory science , college educator and administrator, so used to multi-tasking. I am retired now but still consult. It is hard for me to concentrate and focus for more than 1-2 hours, which is unusual for the former me. Just didnโt know if it was age or PV. I would like to know if the Ritalin works for anyone else! Thanks for sharing.