Initial symptoms of MDS

[JRHA5]

Hi all.
I was wondering if i could ask 4 advice from anyone. Ive been diagnosed with MDS a couple off months ago. Ive got my 1st blood test coming up next. But my ? Ive been reading about early syptoms. Ive been suffering from swollen ankles 4 a few years now. I drive alot as im a taxi driver and have noticed they do swell up the longer i sit in the cab. I got my bother from them. Theres no pain or anything. They do go down over night while im asleep. I did put it down to being over weight. But ive recently lost 2 1/2 stone by going on a boot camp in Thailand . I have been reading it could b a sympton off MDS. any feed back would nice.
Thank u all 4 listening.

[chris]

Hi James

Sorry to hear about your swollen ankles but I guess if you’re driving a taxi all day, it’s similar to being on a long haul flight and a lot of people get swollen and puffy feet after that? They go down when you elevate your feet at night?

If you get a break at any time in the day, it would help if you were able to put your feet up somewhere for 20-30 minutes - but they have to be higher than your hips!! My Mum had swollen ankles for years and was repeat prescribed diuretics which didn’t make any difference ( other than to make her keep going to the toilet!). But getting her one of those electric chairs which raises her feet higher than her hips and sitting in it several times a day has made her ankles really slim again! It’s a circulation problem as you get older or if you’re in a job where you’re sitting all day!

Always worth a trip to the GP though to check things like blood pressure?

Hope you soon get your full MDS results. Let us know.

Chris

[JRHA5]

Thanks chris.
I will keep u updated.
Jay

[JRHA5]

Hello.
Just like to ask a ? If anyone can shed a little ligjt.
I watched a short video about lack off red blood cells. Basicailly the video says that testosterone can help the DNA produce more good red blood cells to help more oxegen into the cells.
Thank u.

[chris]

Hi James

How are you doing?

I’ve not heard anything about testosterone and red blood cells. As ever, best to ask your haematology doctor.

kind regards

[RUSE7]

I'd be keen to know more about that, although, as a woman, I might be a bit concerned about side effects. My red blood count is on the way down at the moment. It's been stable for about 5 years, but recent tests have it dipping.Waiting to see if it's a trend or a blip, but suspect the EPO has stopped working which is not a great outcome. Predictable, but disappointing. Anyway... the show goes on. Take care all.
Ronnie

[NDTA10]

Hi I've just been diagnosed with multilineage MDS at long last. I say that because this has taken a long time with a lot missed opportunities to investigate by my surgery over 2 or 3 years which I didn't even know about. I'm having EPO injections and hoping they kick in soon. The only thing that has really scared me is the immunity thingy which I'm trying to deal with without becoming a hermit. I am lucky to have a large group of girlfriends and want to keep them. I sent a wa asking to be told if anyone is unwell so that can avoid them and I thought they would realise that I wouldn't want to too close but someone still insisted on giving me a cuddle even though I backed away. I don't want to wear a mask ALL the time I'm out ........ how do others deal with this.

[chris]

Hi there. So sorry to hear about your MDS diagnosis and how long it has taken to get there.It’s such a rare disease and many GPs may not see somebody with MDS in the whole of their working life! But they should at least know when to refer to a haematologist?!

Completely understand your concerns about immunity and yet wanting to remain as sociable as possible. When I was first diagnosed with CMML (chronic Myelomonocytic leukaemia) over 25 years ago, I took the time to explain clearly to all my close friends how vulnerable I was to infections ( the clue being the word “leukaemia!) and therefore how I would appreciate it if they cancelled any planned gathering with us if they had even the tiniest symptoms of an infection! I cannot tell you how many times that request was not honoured. Turning up for a dinner party with a croaky host with runny nose; going to a wedding where one of the friends sat literally sweating down his face with a high temperature among elderly guests, young babies and myself; people still insisting on a welcome kiss which I had to duck or present the side of my hair! Also noticed how many almost complete strangers want to double kiss on the face!! Aaaargh! I’d hoped that the Covid pandemic would have educated the general public a bit more about how infections are transmitted but it appears not! We do not go indoors with anybody for the past 3 years but 3 weeks ago I literally popped my head in the door of our allotment canteen when some thoughtless idiot sneezed right out into the room without any attempt to cover his mouth-resulting in me getting a nasty cold and cough which is still ongoing after 3 weeks -such is the poor state of my immune system. Fortunately not Covid! So, whilst SOME people can be considerate, I would say prepare yourself for people who really do not understand your risks and concerns and don’t feel shy about reminding them gently. My family are great and my children are very observant of the grandchildren and will keep them away even if it’s only a sniffle! I’m afraid Covid really ramped up the anxiety for us. I don’t wear mask in open air but still wearing if I go into a shop -especially this time of year when more crowds.
Good luck with negotiating this different way of being. We all have a different risk:benefit approach and others will be more relaxed about it!

[chris]

Sorry. A PS

You are aware that, as an MDS sufferer, you are eligible for Covid treatments if you should get Covid. Also you can get free Covid lateral flow tests from a pharmacy. Read info on the website.

https://mdspatientsupport.org.uk/covid- ... mpromised/
Chris

[NDTA10]

Thank you Chris for the info and very helpful to get another persons thoughts on it. Also V interesting about how long you have had your diagnosis. Yes my son will make sure the grandchildren don't get upset at no kisses and I have suggested no cuddles too as they always seem to be either brewing or full of cold.