Hi Everyone. Dont mean to be a drama queen but I have just had my results of my biopsy from my progressive black leg problem. What I thought was a vanity problem, leg turning black & all that, turns out to be another “nasty”. Morphea Scleroderma. How ironic, it has the same initials as MS!!! Apparently it is quite rare. My problem is they are pretty sure I have the progressive form, which they can do b***** all about!!! Happy days!!! B***** miffed right now!!! Anyway onwards & upwards!!! Someone, somewhere is having a laugh with me!!! Rant over, feel better now!!! You lot are the first Ive told, thanks for being there! Tracey xxx
It shows us with ms of every kind are very special people and you are obviously doubly so.
As I know nothing about this new one can I ask the implications and treatment plan?
How are you with it all or is it too early to say yet?
By treatment plan I mean is there anything you can do if the appearence is bothering you?
Pip
Hi Tracey, just had a gooogle of the condition. Seems to be caused by over production of collagen…if Ive got it right. Says it is very rare.........see you really are special to have it! But I imagine youd rather not, thank you very ta, eh?
Various treatments are mentioned. Have you been offered anything at all?
Whoever it is who is laughing at you, is doing the same to me…nasty so and sos, aren`t they?
Sending luv and support,
Polly xx
Hi Tracey,
Good news but not good news. Pleased you don’t have to wait any longer for the result. I don’t really know what morphea scleroderma is, is it related to ms?
Suex
Hi Pip. All new to me til this morn, even though I am (was) a dietitian. Knowledge on Scleroderma but not Morphea. It is the over production of collegen & the skin becomes hard & dicoloured. Problem is it can affect the internal organs. It occurs in people with autoimmune diseases, MS & Rhemoitoid arthritis sufferers, Im lucky enough to have both them!!! They dont seem to have an answer for treatment, steroids was suggested to slow the progression, although they have to consider other drugs Im on, which includes steroids at mo. As for the appearance it is getting worse daily, so Im going to need a bumper pack of cover up cream!! At least all the symptoms are the same as MS etc, trouble is wont know which is playing up & which 1 is causing the pain!!! Just a bit in shock at mo, I’ll get my head round it when Ive told the family!!! Tracey xxx
Poll, Sue Is related to MS indirectly, got to wait to see if they come up with any treament suggestions. To be honest got the impression Im being “written off” as if there is nothing they can do!!! Bit worried its progressing so quickly though, leg really not a good colour! Started on the other one as well, hay ho, good job I only wear jeans!!! Tracey xxx
It must feel like a huge body blow with uncertainty over two conditions.
At least you can use us as a massive body bag to take it out on.
Dont really know anything helpful to say other than don’t let them write you off, because if as you say it can affect internal organs in a physical way, they might blame sensory ms symptoms when it is a physical problem caused by the other.
On a cover up front my niece (the two toned tinker to family) was born with 50% birth marks due to a rare condition Klippel Trenuary. The birth mark society have fantastic leads to products the conceal anything…just a thought should it become a need.
Be kind to yourself you know where the cyber shoulders are
Pip
Thank you!! Sure there are many people with worse things!! Just one thing after the other lately, but thats the way it goes!!! I feel better when Ive told family, they all at work & I dont want to ruin their day!!! Nevermind, leg hasnt fell off yet! Tracey xx
Sending more hugs, hun
luv Pollx
Oh Tracey dont really know what to say so going to send love and huggs your way xxx