Myelofibrosis

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Karen

Myelofibrosis

Post by Karen » 01 Nov 2011 21:04

Hello

I hope that you are all keeping well.

I've combed the internet trying to see of there might be a connection between MDS and Myelofibrosis, but can find only academic articles which go over my head. I can see that they often present with simlilat symptoms, but I wondered if Myelofibrosis could develop as a result of MDS.

My Dad was diagnosed with MDS some time ago, and has been undergoing treatment with meds (I forget the name) and regular transfusions. A transplant was under discussion earlier this year then the team at Kings decided to keep him on the meds/transfusion programme for a little longer.

Since then he has developed very painful swelling in his feet and ankles that left him hospitalised for a week. The hospital and his GP are treating it as cellulitis, but it seems odd that he would develop this in two distinct areas as it is usually introduced by a scratch or cut and is localised. He's been suffering for nearly a month now so I've been looking around to see if anything else matched the symptoms and Myelofibrosis popped up. His skin is very red, and sore to the touch, his ankles and feet are swollen and very painful.

Does anyone know if there if there is a known link between MDS and Myelofibrosis, or am I just jumping to conclusions in the hope of clearning this up?

Any advice gratefully received. I can see that another forum member started a thread about their experiences with Myelofibrosis, but I didn't want to hijack that.

Karen x
Jayne
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Joined: 16 May 2011 11:33
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Re: Myelofibrosis

Post by Jayne » 02 Nov 2011 10:35

Hi Karen
I am sorry but I dont know the answer. (I didnt want to just read your post and not respond!). I think once your body starts being poorly in a certain way, and with us it is our blood, it can lead to other side-affects.
I hope you do find the answers you are looking.
Jayne x
Jayne
Feb 2011 MDS RCMD. Jan 2012 RAEB.
Feb 2012 - 2 lots of chemo each 4-6 weeks in hospital to destroy leukaemic cells resulting in remission from AML.
July 6 2012 - Stem cell transplant
Doing very well, feel great
Age 43.
Karen

Re: Myelofibrosis

Post by Karen » 02 Nov 2011 11:51

Hello Jayne

Thank you for your response.

I know that this isn't the forum to ask for clinical advice, I was just curious as to whether any other MDS sufferers had seen something similar.

I keep trying to find order and reason in an effort to understand what's happening to my Dad, but I guess that the MDS is going to complicate what may be run of the mill complaints otherwise.

Karen x
janetstanford
Posts: 335
Joined: 01 Nov 2010 17:54
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Re: Myelofibrosis

Post by janetstanford » 02 Nov 2011 17:15

Hi Karen

Same as Jayne did not want to read post and not answer do not know
I have transfusions and i get asked at every 1 and at clinic any swelling of ankles i did have for a time before i was diagnosed and for a time after ( after treatment my feet reduced from 6 back to a 5 honest )...this question is asked because of fluid being left behind when oxygen is low and the heart is having to work harder ...sorry do not mean to cause you concern and worry just a thought as if HB is low this may be the cause when i had swelling within a few hours of a transfusion the swelling was gone ....
an article in the daily mail on the 30th caught my eye as for some time now i have had pain in the joints elbows knees like a pulled muscle and have mentioned it but the doctor is not concerned the article is about FIBROMYALGIA and this is what i am going to discuss with my GP may be worth a look


other than that i suggest a message to Sophie i am sure she can help and she is better informed to help than us so good luck hope you get your answer quickly :)
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