Limited Sclerosis - Help Please
Posted 04 April 2011 - 03:01 AM
I am in need of some help please - I was diognosed in 2010 after 9 years of hand and feet swelling, etc, etc, etc, but although my care is being shared by two different hospitals, I believe this is causing confusion and although I am requesting treatment - I am not receiving any!
Is anyone able to tell me what these symptoms might be if they are not Limited Sclerosis?
Face - the skin across my cheeks is pulled very tight (I moisturise several times daily to make it more comfortable), the only wrinkles on my face are a few on my upper lip (I am about to turn 50). My lips are now just thin lines only a few mm's deep and I cannot open my mouth wide. I do have sjorgrens (confirmed). I experience quite a lot of numbing across my cheeks.
My Consultant says I do not have any facial scleroderma involvement.
The Consultant confirms my hands have scleroderma involvement!
After a shower (and leg shave!) I have a diagonal line on the front of each leg. Above the line the skin is matt, below the line the skin is very shiny. My ankles are almost permanently swollen and painful. My toes are like glossy sausages with extra swelling at the joint where it meets the foot. My smaller toes are curled under - the larger toes actually point in an upward direction but I think that is because I am in pain and do not put my toes down when walking. I walk very badly and have major problems especially with stairs.
My Consultant says I do not have any scleroderma foot involvement.
I have had IBS since 1996, I have also had constipation since that time. I have had a stomach blockage, I have gastritis, I have a hiatus hernia and I have amazing reflux that keeps me awake - mainly because of the uncontrollable popping sound at the back of my throat that is often continuous for hours and something I haven't found a way of controlling!
My Consultant says no scleroderma stomach involvement.
I receive help from the OT department with my hands but they are not able to help me with any other symptoms because my Consultant says I don't have any other problems! He says because it is 'Limited' Sclerosis.
All the above are very obvious things to see, so at least I know they are not in my head, but am I interpreting these things as Scleroderma when they are not - heavens what are you all going through if the things I have listed above are 'nothing'.
I have numerous other symptoms and swellings, dreadful fatigue and lots of joint pain - housemaids knees and golfers elbows but most of all at the moment I am suffering from frustration and confusion. Please if you have any of these symptoms - what does your Consultant say they are?
My sincere apologies for having a moan but I do not know where else to turn.
Best wishes to you all
Posted 04 April 2011 - 07:03 AM
I'm so sorry that you're suffering so many horrible symptoms and feel that you're not really getting anywhere.
I seem to remember from one of your other posts that you were seeing a Scleroderma specialist but that his bedside manner left a lot to be desired!! Please note that I have no medical training at all despite telling my doctors their job constantly (I'm sure they must hate me!! ) but certainly a lot of your symptoms could relate to Scleroderma. However, they can relate to other illnesses as well, which makes it very difficult for a layman to be more precise. Also, the symptoms I experience, although possibly similar to yours, doesn't necessarily mean that we're suffering from the same complaint as everyone reacts differently.
I do think though, Jane, that it might be worth approaching your doctor again to see if they would refer you to a different consultant as the one you've been seeing appears to be less than helpful. One thing I do know for certain is that you have to be very proactive and be your own advocate with the NHS or you can get swept along without really making any progress. I was incredibly lucky in that all the doctors, consultants and rheumatologists that dealt with me were on the ball, but sadly I know some of our other members have not been so fortunate. I deal with three different hospitals and I find that very often they don't communicate with each other (a case of the left hand not knowing what the right is doing!) so I always carry all my relevant notes with me to each consultation to avoid a "Groundhog Day" scenerio!
Don't worry at all about having a moan, with all you've had to put up with you're entitled to and that's what we're here for!! Here's a as a consolation!
ISN Assistant Webmaster
SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager
ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)
Posted 04 April 2011 - 01:15 PM
I will echo Jo's comments about being your own advocate. If it wasn't for me searching and pushing for a diagnosis and care, I hate to think how'd I'd be feeling right now. It's not right, but unfortunately that's forced upon us in many cases. I sure hope you can get everyone on the same page and get something to give you more relief of your symptoms. Sorry I'm not help in this department, but maybe someone else will be.
Posted 04 April 2011 - 03:01 PM
Absolutely, you need another opinion and don't settle until you get one! You really should see another scleroderma specialist (that way they can rule in or out as the case may be). It's very important that you find a doctor willing to listen to you and to also work with you. It does not sound like you have found that yet.
Not sure where you live either, but the ISN Team can provide a list of specialists if they know roughly what area you are in (although you might already know this?).
By the way, this is a great place to 'moan', you have plenty of ears who will all say
Please do let us know how you make out?
Posted 04 April 2011 - 03:54 PM
Limited scleroderma is still a systemic form of scleroderma and can be serious and debilitating.
I don't know what expert you're seeing but have you considered a referral to the Royal Free in London, it's a centre of excellence for scleroderma.
I realise that you must be incredibly frustrated right now but don't let that stop you.
Take care and keep posting.
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)