New to this, old to MDS

[Running Bird]

I am new to this forum, but have been diagnosed with MDS for 8 years, I am 42.

Up until last year this really didn't affect me, but my local hospital moved me over to Kings last year as my bloods all continued their drop which they had been doing progressively for 8 years, where they told me I needed a transplant and then changed their mind 3 weeks later for the moment.

I am a running coach/Personal Trainer and I run marathons and I find it really hard to tell what is sheer tiredness and what is MDS. I have minor symptoms I feel now, night sweats have been constant for 8 years - please tell me if anyone else has, I literally drench the bed 5 nights out of 7 - my poor husband comes up to bed after me and just can't use his side of the bed as it is just soaking all through (I sleep loads 10 hours every night minimum) and I also get dizzy getting up and down (I know this is quite normal) but for me this is constant throughout the day I am clenching my buttocks to stop it!!

I really don't know what I want to say by writing on here, I guess I want to know what stage do I have to get to for them to go ahead with a transplant and what stage do I have to start getting transfusions. I am just at the end of a 5 week throat and cold - but hey hasn't everyone had this with huge fatigue - but how do I know if this is MDS or normal?

I guess I am just constantly confused, I think in my heart I now things are slowly changing as I feel I am losing fitness and the effort to keep up with runners who I would consider novice is now much greater, but maybe this is just me getting older and tireder and doing too much/having two children.

This is a real ramble I am sorry. I am normally so concise!!! The other issue is I cannot tell my mother which saddens me as I was critically ill 9 years ago with something else and she has never got over it, so I just can't do it again, I have however told my husband and brothers.

Ramble over - I shall try and be more constructive next time.

Any advice on anything massively appreciated!

[Claire]

Hi Caitlin -

I don't have a lot of advice to offer I'm afraid but I can relate to how you are feeling. I am a similar age to you (45) and was diagnosed with MDS in December 2012. It's a recent diagnosis but my consultant is sure that I have had the condition for about 5 years. This would explain some mysterious symptoms prior to 2012 and the constant feeling of never being 100% well.

I know exactly how you feel when you say that you don't know whether your symptoms are due to the MDS or just what everyone else is experiencing. I have had some strange virus for about 4 weeks now and I still don't feel well. I just wonder how long it can drag on for. Is it worse because of my MDS or is this just what everyone else is experiencing up and down the country?

I am certainly impressed that you are so fit though! It's got to be good that you can still go running. I am not up to much at all at the moment. I find that my part-time job exhausts me and I spend my days off and the weekends recovering. It is making it very difficult to plan anything at the moment. My bloods are stable (not normal but no worse than my last check-up in March) so I don't understand why I feel worse

Anyway - I'm sorry if I have hijacked your thread to talk about myself but did think that it might help you to hear from someone in a similar situation. I'm sure someone else on this forum will be able to offer some useful advice. They are fantastic!

Take care

Claire

[Claire]

Sorry Caitlin - just remembered that you asked about night sweats and dizziness. I don't get these but I do get a lot of dizziness. Maybe the night sweats are due to something else? Could it be hormones? (I'm no medical expert by the way!) I do put every symptom I have down to the MDS but I realise that sometimes I could be ignoring something else entirely!! It is very confusing...I agree with you completely.

C x

[christina]

Hi Christina here, sorry to hear your not feeling 100% and we all know how difficult it is to cope with MDS. I do wish you had been at the Forum in London a few weeks ago as it was so informative and everyone was able to ask their own questions, I found it so interesting and learnt such a lot about our condition and how we are all so different, two things I would say, do try and make the next one and in the meantime phone Sophe who is always there to help and when you next visit Kings have all your questions ready for them, they are always so supportive. Think its great that you can keep so active, I have to make myself as I feel that you must keep up your stamina, although you are much younger than me. I still play golf and walk every day and now i am on a new drug that I hope will help in having less transfusions. I'm sure you will get a lot of feed back and hope you are feeling better soon, and I agree it could be hormones causing the sweats, i don't get them but have many freinds who are going through the menopause who have really bad night sweats and maybe yours may be worse because of the MDS, who knows but do tell your doctor, regards Christina

[Russell]

Hi Caitlin
Your symptoms seem remarkably similar to those I experienced - the night sweats, fatigue, dizzyness etc - so familiar. I was a regular gym attendee and used to coach Rugby and, like you, felt fatigued. I put it down to getting older! With me the problem was not associating illness with increased fatigue and loss of performance. I pushed on until eventually my body body just said 'enough' - by that time my MDS had become quite pronounced and treatment became urgent. At least you have been monitored and I have the utmost faith in King's advice - I'm sure they will not want to put you through a transplant without being pretty certain. For me, transplant was the only alternative, an 'easy' decision. But the results have given me back my life in a way I would never have guessed - I feel like I did 20 years ago!! If you want to have a chat about it then let me know, especially if you want to cover transplant.
Russell xx

[christina]

Russell what an up lifting post, hope lots of people got to read it Christina

[chris]

Hi Caitlin and thanks to all for responding. Hope it helps you Caitlin. Night sweats can be a feature of some types of MDS but I am sure a simple blood test for hormone levels can rule in or out whether it is due to early menopause. It certainly sounds horrific for you and your husband to have to deal with this nearly every night.

Russell is right - a stem cell transplant would only be pursued if and when your medical team at King's feel it is your best option.

I do also feel sad and very concerned about you not feeling able to tell your mother because of a prior experience in which telling her did not go well. It also places a burden on your husband and brothers on keeping your secret. What about your children? Have you told them? Will they have to keep it from their grandmother? A friend of mine recently had a heart attack and did not tell his mother to protect her from worrying. Shortly afterwards, she subsequently died very suddenly and I feel it is so sad that she may never have had the opportunity to support her son through his illness and surgery or been able to tell him things which his illness may have prompted her to do. I would urge you to reconsider as this will become a big barrier of trust between you - and your relationship potentially harmed further if somebody else inadvertently reveals what is happening.

Sharing this diagnosis with my family and friends has enabled them to be fully involved in supporting me and I have felt very loved and treasured - in life - rather than when it is all too late to say the things we always meant to say.

Take care

Chris