Newly diagnosed

[Devjon]

Thanks cris
I will try and join the zoom class.
Just a brief bit more off my story. I actullay went on a health kick end off feb. And spent 3 months in thailand on a boot camp. Which was fantastic. I was training 3/4 hours a day. Getting on great. Lost 16 kilos in weight. Felt fittest ever only to come back to the news i had mds. . So was very shocked. Im 59. Fit most off my life.football tennis squash.gym now. But did put on weight as the years went by sadly. Now im down to 90 kilos or 14 stone. I do hope to carry on losing weight and hopefully this might help me fight mds. I am worried about getting the symtoms off fatigue or breathless. Which i take it will b the end off my training. Should people still train with mds. If anymore no.s a suggestion. Kind regards to all. Jay.

Hello Jay,
I was diagnosed at the age of 64, I'm now approaching 74. I was very active, I'd been a runner since my late 30's and had over 100 marathons under my belt as well as dozens of Ultra's. I still manage to keep running and I'm pleased to say that my last Marathon was London 2014 where I ran to raise money for the MDS Patient Support group.
I'm still running and training regularly. I did a 10K race last week end and have a 5 mile race on Sunday. The important thing is to pace yourself and make sure you give yourself plenty of recovery time. Your weight loss is a positive, don't overdo the weight loss, but carrying excess weight will use more energy. I had a chat with my consultant who was happy for me to target a weight at the lower end of the recommended BMI for my height. Wishing you all the best. When I was diagnosed my initial feeleings were of relief to have finally discovered what was causing my fatigue, and determination to find a way to keep active. I've had great support from the team at MDS Patient support and the Zoom meetings are a great way to get to know others who are in a similar situation.
All the best to you.

Kevin

[JRHA5]

Hi kevin.
Thanks 4 reply. 1st thats great about your marathons and running. Must congratulate u. Thats fantansic. I ran the london marathon in 2000. But 1 was enough. Lol. Done a few half marathons. But sadly a bad knee now stops me running but i can still do the bike and cross trainer. So thats good. But listening to your story kev and given me a lot off hope and cheered me up.fingers crossed we can all take hope that its not the end Just to let u no. I spoke to my consultant 2 days ago and she said. The doctors have been looking into my medical records.and she said. Ive no ive only just been diagnosed with MDS. But my bloods have been low since 2010. So she thinks i may have had this mds 4 a lot longer. My levels have been stable last 5 years.so she thinks this is all good maybe wrong word. Lol. But its seems to b a good news she says. But she does want me to have another bone marrow bioposy. Cause a couple things came back inconclusive. I hope to try and get into the zoom classes. But im not a great IT man. Lol. But your story is great to hear. Keep up the running. Thanks
Jay.

[Devjon]

Hi kevin.
Thanks 4 reply. 1st thats great about your marathons and running. Must congratulate u. Thats fantansic. I ran the london marathon in 2000. But 1 was enough. Lol. Done a few half marathons. But sadly a bad knee now stops me running but i can still do the bike and cross trainer. So thats good. But listening to your story kev and given me a lot off hope and cheered me up.fingers crossed we can all take hope that its not the end Just to let u no. I spoke to my consultant 2 days ago and she said. The doctors have been looking into my medical records.and she said. Ive no ive only just been diagnosed with MDS. But my bloods have been low since 2010. So she thinks i may have had this mds 4 a lot longer. My levels have been stable last 5 years.so she thinks this is all good maybe wrong word. Lol. But its seems to b a good news she says. But she does want me to have another bone marrow bioposy. Cause a couple things came back inconclusive. I hope to try and get into the zoom classes. But im not a great IT man. Lol. But your story is great to hear. Keep up the running. Thanks
Jay.

Hi Jay,
Good to hear from you. My first Marathon was Birmingham Peoples marathon 1982 and I just got in to the habit! Met my wife Ros through running, she had a total knee replacement about 12 years ago but she's been running again for the last couple of years. I had a couple of bone marrrow biopsies as the first one, like yours, had a couple of inconclusive markers. With my second one the consultant did it herself. It only took a couple of minutes. What made me laugh was she kept all her kit in one of those little plastic black and yellow toolboxes that you get from Wilko
Another similarity is that my consultant also thinks that I had it for a while before becoming symptomatic which I suppose is a good thing as it seems to indicate that there's no rapid progress in the disease.
I took up cycling after being diagnosed, my wife Ros is a keen cyclist so I decided to join her. I got a folding Bike and I absolutely love it, I can pedal in bursts and let my legs recover between efforts which is something you can't do when you are running. We've had a few adventures cycling, and of course it's a great way to get to the Pub!

Do try to get on the Zoom meetings, it's quite straightforward and if you give the Patient Support team a ring they will sort things out for you.
Keep us informed about how things are going.
All the Best,

Kevin

[JRHA5]

Hi kev.
All sounds great with your keeping fit. I hope to keep doing the same like u. And hopefully like u say its a slow prognois. . Im back in 3 weeks 4 next levels. Hopefully i can share good news with u. I will try to sort zoom out. I was reading an acticle about vitamin c being a good idea to take apparently there doing research into it. But ha im no doctor. And many people say dont believe everything u read. But it sounded good. . Stay strong and hope things stay well 4 u. I keep u updated. Good to talk. Jay.