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Amanda Thorpe

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Posts posted by Amanda Thorpe

  1. Hello Celiesblues,


    Sorry your appointment has left you with many questions, perhaps writing some down for your next appt would be helpful and taking someone else in with you to remember the replies. My husband always comes with me.


    Yes Sjogren's is an autoimmune disease.


    Keep us posted and I hope you get some definitive answers after your next appointment.


    Take care.



  2. Georgette


    My hands are very similar to Razz's except I would say hers are worse. I did ask my rheumatologist about this and he said it is possible for them to return to normal, however, the contractures can damage the joint. If the skin softens you may/not get normal hands back. Like everything else no one can say for sure!


    I always assumed that if the skin softened the movement came back so was rather surprised to find out otherwise. :blink:



  3. Georgette


    I meant to say that the first sclero sufferer I met was diagnosed 25 years ago. Her mobility was back to normal as was her skin but she is on dialysis having had renal crisis with the early sclero and she still has fatigue. Having said that she's a busy girl even travelling abroad with work frequently. You can most definately improve even if symptoms or the effects thereof of still remain.



  4. Hello Georgette


    There is no cure for scleroderma only treatments for the symptoms and to try and halt progression.


    My rheumatologist said that the disease plateaus and then becomes inactive as opposed to actual remission. The initial activity period is usually 3-5 years when you get the initial onslaught of symptoms but further symptoms can develop after that later on down the line.


    I understand that the fatigue is supposed to get better as can some of the symptoms although flares happen.


    The difficulty with sclero is that everyone can be so different and it's impossible to predict how anyone will progress so we carry on regardless! :lol:


    Take care.



  5. Hello Cin


    I am in the Uk ond on our equivalent of your disability. Thankfully here it seems to be easier to get and they pay you straight away.


    The form, 50 pages long front and back asked for details about everything including going to the bathroom and what assistance I needed as my husband also gets paid as my carer. Although we laughed whilst completing it it was quite unpleasant to have to breakdown how much time my husband spent doing things like bathing me and dressing me, I felt like a total invalid capable of nothing but being this huge burden on society that needed paying as did the husband for looking after the huge burden on society.


    When completing the form remember to do it on worse case scenario, thinking of how you are on your worst days not your good ones.


    I hope you get it first time round, you've contributed to the world of work now you need it back through no fault of your own.


    Take care



  6. Hello Sophiebun


    I am sorry you're having this problem. I have not encountered this.


    I find cahsiers etc can be off because I usually go out in a wheelchair. They're either falling over themselves to help, think I'm simple or just ignore me, you can see people trying to avoid making eye contact! What surprises me most though is my reaction or lack of. I never say anything and that's very unlike me. :blink:


    I hope you find some relief soon.


    Take care.



  7. For once someone on youtube not making an idiot of themselves...leave that to me people if I ever figure out how to do it. People from different countries shows its a gobal disease, widespread.


    Well done Razz and your hands are like mine, although I have met other sufferers I have never seen anyone with my hands. If only we could wave to each other



  8. Hello Ana


    I have replied to your pm and please feel free to come back to me. Discuss everything with your rheumatologist as Peggy says, I didn't know about the sclero related depression because of affected seratonin levels.


    Move if you both feel up to it and when they ask you at customs "anything to declare" reply "yeah baby!"


    There are details on the forum about sclero specialists worldwide.


    Take care.



  9. Hello aka79


    You've got to draw the fine line between being aware of new symptoms whilst living a normal life. My suggestion is to carry on regardless until something significant turns up that is of course IF something turns up at all.


    I would just be cautious ot two things, a rheumatologist not aware of sine scleroderma as you don't want someone dismissing potential symptoms because they think there has to be skin involvement, too much information gathering as lots of it may never apply to you. I have diffuse SSc and in the beginning read a little black and white leaflet of doom that detailed in gory glory every possible symptom from facial changes to feacol leakage and everything in between. Needless to say over a year on and I still don't have the the whole myriad of symptoms described so worried for a time for no reason.


    Even if worse case scenario, you became one of us, there is still life, good life, to be had after scleroderma moves in. It's just different to what you expected it would be.


    Take care.



  10. Hello Celies


    I am glad you've found this forum, it's a great help.


    Please try not to worry about possible diagnoses because "it is what it is" to quote a member of this forum. In other words you can't effect the outcome by worrying although you are going to be concerned.


    That you have lined up appointments with a dermatologist and rheumatologist is excellent and as already advised take written questions with you and if possible another set of ears to listen. It can be hard to take it all in and remember it.


    Please keep us posted and take care.



  11. Lizzie and Jensue


    Also being in the UK I am disgusted at the ridiculous and quite frankly greed based rises in gas/electric prices. Usually when winter calls we sadly wonder how the elderly and those on the poverty line will cope with heating bills but now Mr/Mrs Average are also included.


    Thankfully I am not yet overly cold because I also suffer with erythromelalgia. Consequently I still have the bedroom window open even right now as it makes me burn and itch, my room's so cold my nose is cold but under the covers my legs are burning. Summer is my equivalent of winter for you.


    When I overheat I find I cool off more quickly if I get my feet cold so presumably the reverse applies. Whether too hot or too cold it can be uncomfortable and distressing. :angry:


    Take care.



  12. Hello Bowbec


    I am into month 12 of cellcept max dose of 2g per day. It it my main med. I have diffuse SSc with wide skin and joint involvement. Internally I have bowel issues but nothing else so far.


    I understand that Cellcept is meant to be good for skin and lung involvement. I have noticed improvements in skin and some joints and nothing has spread.


    Side effects are hard to distinguish from sclero problems or side effects from other meds nevertheless my opinion is that I haven't had any I could definately name.


    I hope you feel able to make the right choice for you.


    Take care.



  13. Hello Suzie


    I hope all goes well with the biopsy. I have only had a skin biopsy which in reality was the simplest of procedures, quick, painless and so small it was covered over with a plaster after having all of 2 stiches in it. I guess a muscle biopsy is similar just deeper.


    However because I am a big wuss I got all creeped out about it before, during and after. Before, I annoyed the doctor by asking what he was going to use to remove the sample with expecting to see a scalpel but instead was shown what looked like a tiny apple corer. During, I kept trying to see exactly what was going on which did not suggest confidence in the doctor and after, I left the "operating room" declaring... don't take it personally but I hope I never see any of you again...!


    Truely pathetic. :rolleyes:



  14. Hello Kamlesh


    I am all for being rare! I always considered myself unique and could not have lived down having a run of the mill illness, particularly as my identical twin's is even rarer. :lol:


    I heard that MS and sclero are equally as common but that MS is better funded hence more well known and vice versa. Why I have no idea, who famous has/had MS as I have never heard of anyone in the lime light having/had scleroderma.


    Of course if scleroderma was properly diagnosed are numbers would greatly increase. I was told that here in the UK there are only 7000 sufferers then it became 8000 then 7000, someone's being mighty careless losing all these people and yes it's weird that the number of people does not change over the years. If it's been 300,000 in the US for 20 years does that mean one checks in as one checks out?


    Personally I think they have no real idea and ought to start counting.



  15. Hello Lyn


    Glad you have come back and I am sure you will find support and helpful advice here. Be assured that you are not on your own in this, I know you alone feel your pain but there are lots of us here who live with pain and as such we can support each other. I now consider pain part or my everyday existence and no doubt will do for a long time to come.


    I get hand pain because I have tight restrticted skin and contractures which means every finger is bent over at the middle knuckle. This morning I did not want to move my hands as the skin was sooo sore and they ache the more I use them and often cramp.


    This is a difficult multi faceted disease that takes us on a journey we weren't planning on taking nevertheless we do adapt, do cope and do continue living...it's life Jim just not as we know it.


    Take care.



  16. Hello Barbara


    I am sorry your mother has this diagnosis, on the up side she has you and you have this site.


    You have already been given great information and I would just like to echo getting a doctor competent in treating scleroderma is vital.


    If the transplant medicine is Cellcept I have been on it for 12 months for diffuse SSc, no side effects and some improvements.


    Please post as issues and concerns arise for you.


    Take care.



  17. Hello Lucy


    What's that song...you are not alone....


    Not long after diagnosis I read a copy of my rheumatologists letter to my general practitioner and it said I had diffuse cutaneous systemic sclerosis and I remember thinking...but I thought I had scleroderma :huh: ... Took me ages to realise it's the same as diffuse scleroderma systemic sclerosis. Took me even longer to work out CREST and limited scleroderma were the same thing. :rolleyes:


    Take care.



  18. Georgette it ain't just you honey! :(


    I said it Ced's thread that doctor's won't treat pain, or even acknowledge it, without a relateable cause that THEY can find. In another thread I thought that the hyper diagnostition and PTDAD cause and effect should be recognised.


    Why is it that from no other profession except rock star would we tolerate dismissal, arrogance, rudeness and plain stupidity so why do we take it from doctors?


    Finally I think that refunds should be given, when doctor's come up with a diagnosis so plain and frankly non medical that we could have made it up ourselves, and yet it actually turns out a real hum dinger of a disease is at play.


    Hope the November appt goes well so that you get to keep you patience, dignity and all!



  19. Hello Teresa


    Welcome to this forum and yes you're right there are lots of us on Cellcept, obviously me for one. :rolleyes:


    I was diagnosed with diffuse SSc in 2007 and am into my 12th month of Cellcept. I am still unable to point out side effects and believe it has improved my condition. I don't have lung involvement so can't help with that but specifically my skin tightness has improved and most importantly I have not deteriorated.


    Although it's a personal choice I would not hesitate to recommend Cellcept particularly as I am not riddled with side effects as far as I am aware. but realise that we can never be sure when we feel rough whether it's the drugs or the disease.


    Hope this helps and look forward to future posts. :lol:



  20. Hello Mando 621


    From your post I assume your doctor has never heard of scleroderma sine scleroderma which is scleroderma without skin involvement and I believe a member of this forum has it. Needless to say I am not making a diagnosis just pointimg out that your doctor may be in error if ruling out scleroderma only because you have no skin involvement.


    With scleroderma kidney involvement can occur and high blood pressure is an indicator of kidney issues. Again I am not saying this is what is happening to you but you may wish to research these things further, there's no doubt information on this site I just don't know where, and discuss with your doctor.


    Hope this helps and take care.