[julsie]

Ok,so to continue with my hypochondriasis,I find that my hands are still looking 'scalded'from the wrist down.Today,my left hand has been very itchy and one patch on top seems to have flattened and adhered to the bone.Over the last few years I can say the skin on my hands has become tough and leathery with no elasticity.Over the last two weeks the pad on my little finger and the one next to it have hardened.I hate to be a pessimist but I can't help feeling this ain't looking too good! So I just wondered if anyone who has scleroderma and is reading this,if this is what I may be looking at.I can cope,I think I just want to know what is going on,
Julsie

 

[raggedyann1]

Julsie,

I have been fortunate that I was re-diagnosed so quickly after coming out of remission that I have not had any visible skin hardening. I do know from pictures that the skin looks shiny with no wrinkles for the extreme cases. The www.sclero.org website is the best one I know of to see pictures and explanations.

I do want to tell you that even Scleroderma can affect each person differently. Some have mild cases and others have extreme cases. I was terribly frightened when I got the Scleroderma part of my diagnosis. The prognosis is not as good as lupus but that is just the past. Medications like Cellcept are having terrific results on Scleroderma patients.

It could be that you have an overlap condition like I do. I have lupus overlap with Scleroderma, RA and Fibro plus the secondary issues that can occur with them.

Have you been to see a dermatologist yet?

Take care,
Karen

 

[julsie]

Hi Karen,
St.Thomas's recommended a dermatologist referral but my doctor hasn't done it.I spoke to him yesterday and told him what was happening and he just said to wait until my follow up in march and if they still want it,he will do it.I have been stubborn in not changing G.P so far as I wanted him to do his job properly.I had to point out to him that my rheumatoid factor was abnormal and he just said'is that an abnormal level?I don't have a reference range in front of me' I thought it would look bad if I changed G.P.I was also worried that if another G.P wouldn't take me on that I would have to go back to him,and that would be very awkward!
Sometimes the skin on my hands is so tight,it splits if I bend my fingers.I'm trying not to be hysterical in front of this doc because it will just enforce his depression thing but I am getting a tad worried to say the least.
thanks for your reply,Karen,
Julsie

 

[julsie]

Karen,
I forgot to say that my fingers always look prunelike,like I've been in the bath too long.Do you have that?
julsie

 

[DnA]

Hi Julsie

Sorry to hear you're not doing so well, I don't know anything about Scleroderma.

However, I read your post and could relate to you saying you were worried about changing GP. I too was like this and had a GP that was absolutely useless for 10 years. I had to change because I moved - both my hubby and I are a medical catalogue of errors and we too were worried about finding a GP who would take us on. When we met him and said 'thank you' for taking us on with our existing conditions, he told us not to be so stupid and that was his job. If you find a good GP I think they quite like the challenge - it makes a change from the mundane.

I kept asking my previous GP to refer me to dermie - he refused even though I had discoid lupus, which he refused to treat. My new GP referred me on my 1st visit.

So keep faith and remember that if your GP isn't doing his/her job - bin them and find someone else after all it's your health and future!

Sammy

 

[julsie]

Thank you for your support,Sammy,glad you got sorted.I'm going to try to change today.
my thumb felt a bit strange today and I just noticed the oddest thing.I have a crevice on top of it,on the pad.Not a cut,but a deep crevice,wierd!there must be someone who has experienced the same!?!I know I'm not that unusual!:umm:
Julsie

 

[raggedyann1]

Julsie,

My fingers don't look prune like at all. That doesn't sound like Scleroderma. What Scleroderma does is your body makes to much collagen and it gets deposited in areas of your body not just your skin. So the fingers get tight and shiny looking from too much collagen.

I hope this makes sense.

Can you call the Lupus Nurse at St. Thomas and explain the difficulty you are having getting a dermy referral?

Take care,
Karen

 

[julsie]

Hi karen,
I didn't think it sounded like scleroderma from what I've read,but I was worried it might be the early stages.Although my finger pads are wrinkled the little finger has become hard and shiny,but there was never any swelling that I can recall.I am hoping it's just some temporary odd thing going on!thanks for your reply,
Julsie