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Amanda Thorpe

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Posts posted by Amanda Thorpe

  1. Hello Kamlesh


    When a new symptom appears it's difficult to determine whether it's scleroderma or A.N. Other at fault. Personally I hold scleroderma responsible for everything, if you view the footage carefully you can see sclero hiding on the grassy knoll.


    I have had unusual eye problems, unusual as in not had them before, and as they occured during winter I don't think they're allergy related, unless of course I am allergic to myself! Possible I suppose as my husband is allergic to, now get this...his own sweat. :lol:


    I am glad you have found relief though and my sympathy to those who have ongoing eye issues, it's extremely unpleasant for a short period so I can't imagine what it must be like on a continuous basis.


    Take care.



  2. Hello Erin :)


    Long time no talkie!


    Sorry you're dealing with this, it makes you feel so uncomfortable and all you want to do is sit still sort of curled up.


    I have constipation, lack of appetite and extreme sleepiness when bactirial overgrowth is around and it's just this week come back to say HI! :angry:


    I hope you get an answer as to what it is and accurate treatment.


    Take care and don't be a stranger, just strange!



  3. Hello All


    Itching is part of this disease and my rheumatologist said it stops when the disease becomes inactive. Great something to look forward to...in 3-5!! ;)


    I use creams, sterioc ointments, antihistimine and a reflux med as its side effect counters itching. All help but it never goes away.


    I might try the oatmeal bath, I wonder how much to put in?



  4. Hello Autigerfaninatl


    Welcome to this forum where loads of people have info to share regarding blood test markers and their relevance in relation to diagnosis.


    I don't know about the antisclero-70, what I do know is that it takes more than blood work results to rule scleroderma in or out. For example people with scleroderma can be ANA positive and have high positive numbers and feel great. They can have low positive numbers and feel awful. In addition 5% of people with scleroderma have a negative ANA so it's neither high or low and they fair the same as those with a positive result. :blink:


    Having looked at this issue myself my personal conclusion is that bloodwork alone means nothing and does not even tie in with how someone is feeling. In the beginning we want factual information the difficulty comes when we realise that the application of the factual information does not necessarily indicate anything or at least what it's supposed to indicate dependant on which doctor you talk. :huh:


    Someone will no doubt explain the scl70 to you so you can make up your own mind. Just don't put all your eggs in one basket as a result of one test. ;)


    Take care. :lol:



  5. Hello JG07


    I am sorry things are so tough for you right now. You're getting good care and no doubt have loads of family support.


    I was on prednisilone low dose, for EM, for a number of months. You are right they don't like giving it in cases of SSc but they do use it.


    I hope you are able to make the best decision for you, it's a hard call with so many variables beyond your control.


    I am sorry things are progressing as they are for you, please let us know how things go


    Take care.



  6. Hello Melissa


    I don't know anything about your condition or the suggested meds. What I do know is that you are in the right place to find support because even if some of us may not be familiar with your illness and treatment most of us are familiar with the benefits vs side effects debate for medication as well as concerns regarding our long term plans and whether they may be thwarted by our illness.


    I am glad you've found us and hope we can provide the support you need. Thank you for sharing with us.



  7. Hello Coweyes


    Welcome to this great forum packed with people eager to share the knowledge and benefit others.


    Scleroderma can cause changes to the hands which can differ from person to person. I have contractures which means the fingers are bent over at the knuckle, the middle one and a couple are starting to bend at the first knuckle below the nail. However I also know people with scleroderma who experience hand swelling and nothing else 10 years on.


    It sounds like you have a good medical team behind you which is a major plus!


    Keep posting and take care.



  8. Thanks for all the replies.


    Soaring eagle I remember this thread as it had so much information. I did find the website I was referring to which is a collection of people's experiences of sjogrens, there is a link to it in the personal stories for sjogrens.

    In the stories people mention swollen eyes and pain as being early symptoms.


    Of course I need to see what my rheumatologist says in 2 weeks time. I just never want to be blindsided again by an unexpected diagnosis, I would rather go in thinking the worse and being told the best.


    I will advise further...to be continued.



  9. Hello All


    Thank's for the replies! I love that people take the time to get interested and reply. Did you like the dramatic my eyes!...my eyes!...I'm a drama queen...drama queen!


    Probably being one here except that having had an atypical presentation of sclero I suspect the same for anything else that may come along.


    Thank you Debz, I knew people's eyes could be painful, swell and vision blur. My vision blurs for no reason and under my eyes is also swollen right now. I will make an appointment to see an opthamologist. Can I ask when the dry mouth started in relation to the dry eyes? Last year dry mouth started and I bought artificial saliva but it improved once I started other meds. Having said that over the last few days I have been unusually thirsty and dry.


    I don't want to have sjogren neither do I want this eye pain to continue undiagnosed which therefore means untreated and so then it continues.


    Thanks again and I'll keep you informed, possible diagnosis sjogrens wanna be! :lol:



  10. Wohali I am sorry things are so difficult for you right now. Coming from a background of negative reinforcements just gives you baggage you don't need to carry. Can I suggest you drop it at the door of the people who gave it to you. Just own your stuff, give others back theirs.


    Your stuff is that of someone wanting to work , progress and have a good life whilst battling a catalogue of health issues. If it turns out you can't continue to work you do what's best for you and apply for everything you can get. You've paid taxes so contributed now it's your turn to be contributed to.


    You are doing everything you can to continue living with dignity for which you should be applauded.


    I hope you get whatever you ask for and more. :lol:



  11. Hello All


    I am sure I read on a site I can't now find that detailed loads of personal sjogren's stories that in the beginning things can swell up and be painful.


    My question is this, my eyes have been painful for weeks, feels like it behind the eye, and tonight they are swolled, particularly the left which is of course more painful. They are not dry the left is almost filmy, the vision won't clear. Reading close up is weird as it looks like the print is shuddering. According to a recent eye test my vision is perfect as is the health, no glaucoma.


    Any guesses?


    Thanks. :)

  12. Hello Jensue


    I have both! How ridiculous is it that you can have a condition in which the blood vessels over constrict along side a condition where they over dialate? Of the two I have the EM worse so am not a traditionally cold sclero sufferer.


    My raynauds, although worse this year than last, is not as bad as most people's it seems. My hands don't go blue, my feet do, and I don't get much pain. What I do get is constant cramp and according to the sclero nurse this is because of the raynauds and hey presto if I put gloves on it goes away. Of course I then have to yank the gloves off as my hand start to burn because the EM has taken over. It also effects my feet and legs, you can actually feel the heat coming off my legs.


    The sclero nurse said that for EM vasodialators are used, the theory being if you keep the blood vessels open they can't suddenly over dialate and that using vasoconstrictors makes the condition worse. That I can agree with because if I use a vasoconstrictor for migraine I know my legs in particular will be burning away later on.


    I take 75mg aspirin for the EM as I stopped the prednisilone 7.5mg. It did help but the potential side effects...I don't take anything for the raynauds though.


    For the EM I have to sleep in the coldest bedroom, no heating on and it's freezing! Covers (more than one) go on/off through the night as I get to hot/cold. My hands have to be out ot the covers most nights as they start to burn otherwise and sometime the feet and legs. I don't know how else to manage the EM as I can't try vasodialators because of the headaches.


    I suspect this won't help because I'm guessing your raynauds is much worse than mine so getting cold is a no go for you. Perhaps the vasodialators would help you with both conditions?


    You have my sympathy, it's so difficult trying to treat one condition without setting the other off.


    Take care.



  13. Hello Skinsister


    Welcome to this forum and I love the name, very apt.


    I am sorry your sister is having these issues and I've no doubt people will join in with their experience as many here have gastro issues.


    Sorry I can't provide any specific info myself, I just wanted to welcome you and your sister. :)


    Take care.



  14. Hello Lizzie


    I think it's the SSc...why...because I don't like it.


    I get skin stinging on my hands and feet which I describe as the stinging you get from a mild burn. Got no idea what causes it, it just comes and goes, pain medication works well in making it go though.


    Pre diagnosis I tried calamine lotion on my itchy beyond belief feet and legs, bad move as it just made the skin tighter and start to sting and then oh yes itch. :( I tried it whilst at work and then had to wait until I got home to get it off....off...off!


    Clearly I am not a doctor but it sounds of the same ilk as sclero, mine cerainly is.


    Hope this helps.



  15. Hello Karen


    Could your mini flares just be the disease by which I mean the symptoms are caused because the disease is live rather than it suddenly become active or worse?


    I get the pulse in the ears thing when laying down sometimes but I have not paid enough attention to what else was going on to link it with anything.


    I do realise this post has been no help whatsoever as it does not answer your questions.


    Sorry, I've no doubt someone else will actually be helpful. <_<



  16. Hello Ez62


    This has to be one of the mostly frequently asked questions so you're in good company. :)


    I have a negative ANA and have diffuse SSc. I was diagnosed as a result of examination (tight, restricted skin most everywhere) and the diagnosis was confirmed by biopsy results which followed after, although the biopsy was done first.


    The fact that scleroderma can't be diagnosed or dismissed by one test contributes to the misdiagnosis and time it takes to get one!


    I heard that 5-10% of us have a negative ANA but then let's face it they don't really know how many of us there are (we could rule the world!) so they're not gonna be sure how many have positive/negative ANA.


    Hope this helps.



  17. Hello Elizabeth


    I am under Prof Chris Denton at the Royal Free and he is most excellent as are his staff and the team of sclero nurses that you can ring anyday for advice. Dame Carol Black is aslo here although I have never seen her.


    I don't know how you're fixed for travelling but I recommend the Royal Free. Regarding a referral there, ring the sclero nurse advise line and ask them if your referral would be accepted. Can give you number and name if you PM me. Alternatively look at the website for the Royal Free.


    Get an expert on board things are too critical for you to be worring about etiquitte.



  18. Hello JG07


    I have systemic sclerosis also. A few months back I was getting red spots, started out as faint red dots that they ended up looking like bite marks. I had it on my forearms and they lasted for weeks.


    I came to the assumption it must have been insect bites (no cat then so no fleas) as the weather was warmer and they eventually went away.


    It was weird though and it must have been a determined bug to munch through the abnormally thick layers of skin. I wonder if it then went off and mutated on account of the cellcept... you know like the 3 eyed fish in The Simpsons?


    I fully appreciate the need to attribute everything to the sclero, I intend to get my money's worth out of this disease. :)



  19. Hello Nina Lynn


    What adds to the confusion is that half of the medical profession can't make their minds up either! :blink:


    From what I have read and been told by my rheumatologist whether you have limited or diffuse is based purely on skin involvement.


    For limited aka CREST skin involvement is limited to the face, forearms, hands and lower legs, whereas with diffuse disease the skin changes can affect the whole body. This segment of info has been lifted direct from the Scleroderma Society UK website, I don't know if doctors in the US etc have a different criteria for determing diffuse vs limited.


    I have diffuse scleroderma because I have skin involvement on my feet, calves, thighs, hands, forearms, upper arms, shoulders and did have on the abdomen and chest. I have a negative ANA and have no idea about SCL70 which I had never even hear of until coming onto this site so perhaps UK/US doctors do use different markers to determine diffuse/limited?


    As if I ain't confused enough. ;)



  20. Hello Teresa


    I have been on cellcept over a year and I could not say whether my tiredness is it or the disease. As far as I am aware I don't have any side effects. Way in the beginning I did have bouts of nausea but we were never sure which meds caused it. I believe cellcept prevented further skin progression and has even improved bits.


    Having only been on it a day it may be coinsidence as it takes awhile to get into the system I think.


    I'm in the middle of a fatigue fest at the moment, no amount of sleep is enough and it can last for weeks but it passes then comes back etc.


    I would persevere with cellcept because until you reap any benefits it's difficult to decide whether they outweigh any side effects, also side effects can come and go but the benefits stay. :)


    Take care.



  21. Hello Wohali


    When the skin on my abdomen was tight it felt a bit like a contracted muscle. I could not lay on my front as there was not enough give in the skin to allow me to stretch at the midrif.


    Antihistimines and steroids can be effective for itching along with topical creams, some say menthol helps but I never tried it. The itching does improve but for me anyway it's always around. It was one of my first symptoms and having no idea what was wrong I was going potty from tit, couldn't sleep, wear clothes properly etc.


    I do know that whatever you use for the itching keeping the skin well moisturised is essential.