My journey

[Trish62]

It started November 2013 small lumps at the side of my face , then large round spots on my hand and painful joints my fingers and wrists where swollen. The red spots then moved to my chest and upper arms . In December I was referred to the hospital rehumatoid arthritis clinc They where not convinced that arthritis was the problem blood tests on a massive scale where ordered .steroid injection was given to ease the painful joints and get me through Xmas .i was admitted to hospital New Years eve very ill and found to be aneaimic and so the tests commenced I'm sure from then to June I had every scan ,scope and blood test known to man all showing nothing other then aneamia and very high inflammatory markers .i had bone marrow tests nothing my test results where sent to various places for checking still a mystery . Then I had a skin biopsy and in June I was informed I had acute myloid leukieamia I was devastated apparently it was only in my skin .chemo was started to which I had an extreme reaction making my very ill three weeks later I reacted to a drug given along side the chemo resulting in my skin being like that of someone with all over second degree burns .then followed a series of infections etc .the consultants then decided another skin biopsy was in order this being the third which was sent to London . As I was due to start chemo again the results came back to say that I did not have AML but hystiocytoid sweets with mylodyspagia . I can't say how thrilled I was however finding a treatment for what is wrong seems any ones guess no one seems to know the steroids help me feel well but do little else . The low dose chemo drug I've just started is early days I just feel tired all the time .ive looked at this forum and hope that reading other people's experiences may help me and my consultants I hope so x

[Shell567 Administrator Sweet's Syndrome UK]

Hi Trish62,

Many thanks for posting about your experience of having SS. It can be a great help to others with SS.

We've had a few members of the SS groups with blood disorders such as myelodysplasia (MDS) or leukaemia, and it can be an incredible worry for them.

Histiocytoid SS is a variant that we don't see too often, and I'm sure that the members of this forum will be interested to learn more about this.

If you haven't read it already, we have some information about MDS, and histiocytoid SS on our blog.

- Myelodysplasia and Sweet's Syndrome. helpforsweetssyndromeuk.wor...

- Histiocytoid Sweet's Syndrome. helpforsweetssyndromeuk.wor...

You may also find the following support group useful:

- MDS UK Patient Support Group. mdspatientsupport.org.uk/

Once again, thank you for this very interesting and informative post, and if you have any more questions, don't hesitate to ask.

Michelle.

[Trish62 in reply to Shell567]

Thanks for your reply and the information you have given on the various sites . I think the worse thing about this disorder is the lack of information the fact that both my dermatologist and haematologist are unable to give answears. I know they are looking further a field for doctors who may have seen this type of sweets to help out . On the bright side at least now I know what is wrong we just need to control it . It's good to know there are others out there and we can share information that may help ( not that I wish this on any one ) x

[Shell567 Administrator Sweet's Syndrome UK in reply to Trish62]

Hi Trish62,

You're right!

Things are better than they used to be, but a lack of information and understanding of SS amongst doctors is still an issue.

It would be great if you could keep us updated. I'm sure that the information you provide will help others.

Shell.

[BonnieG567]

Sounds like I'm lucky! I don't think my Sweet's is nowhere as near as bad as this.

[Trish62 in reply to BonnieG567]

Thanks for your reply I hope I didn't sound too miserable it's been a difficult year but things are looking up . I've got a very good support network with family and friends . And now that I've found this site hopefully I will learn how others deal with their condition it's good to hear from people with the same problem it can make you feel very isalated x