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Amanda Thorpe

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Posts posted by Amanda Thorpe


  1. Hello JJ

     

    I had no idea I had SSc until I was told by the first rheumatologist I saw, after the symptoms had been rapidly progressing for 7 months, prior to that progression had been slow. Before the rheumatologist 3 dermatologists told me it was necrobiosis lipoidica, then 1 of the 3 said morphea. Oh yes let's remember my general practitioner who diagnosed leaking veins before anyone else came up with an alternative.

     

    It was never a diabetic disease but was morphea that then took 3 years to become SSc.

     

    Thankfully the first rhuematologist referred me to see Prof Chris Denton a leading rhuematology expert based at a centre of excellence for scleroderma at the Royal Free. Any problems and I ring the sclero nurse for advise or speeded up appointment as necessary.

     

    Actually looking back I have had bowel dysfunction for years (was told IBS) and bouts of heartburn and fatigue, creakingand painful joints so I reckon SSc has been creeping up on me my whole life.

     

    Amanda

     

    ...it's my disease and I'll cry :mellow: if I want to...


  2. Hello Maria

     

    You are right when you say it's always something. Sorry you struggled through mis-diagnoses, many here did including myself. I was told I had leaking veins, what on earth is that? :huh:

     

    I get muscle twitching, mainly in the legs and arms but nothing major. In the beginning I had muscle spams particularly when asleep and I would wake to find a limb flying in the air, I lost count of how many times I smacked myself in the face! :angry:

     

    I hope now your doctors are working to give you appropriate treatment and can help ease your symptoms.

     

    Make the most of this forum because whatever you are going through no doubt someone here will have experience of it and will be able to encourage you through.

     

    Take care.

     

    Amanda


  3. Hello,

     

    I am afraid I can't help regarding benefits etc and trust some of the members who do have experience will contribute.

     

    I just wanted to say congratulations and I do hope you do get married and it has no financially adverse effect.

     

    It's my 11th wedding anniversary today, can you tell I love marriage?

     

    Take care

     

    Amanda


  4. Hello Healthseeker

     

    Initially I had a blood test once a week for a month, then every two weeks, then every 4 weeks. I complied initially but then did not and went 6 months between tests. I am now back to regular which is now every 8 weeks. So far so good and if they had not been it would have been my own fault for not complying!

     

    Take care.

     

    Amanda


  5. Hello All,

     

    Sorry for the frustration of lack of diagnosis. Nothing is worse, not even being told you have SSc, in my opinion. When the rheumatologist told me it was SSc and even though I knew what this meant it was preferable to being given the big I don 't know what's wrong with you.

     

    I have atypical diffuse cutaneous systemic sclerosis and a year after diagnosis still have a negative ana. My symptoms came on thick and fast from Feb to Aug 07 by which time I could hardly walk. Little flexibility in all joints, none in wrists and ankles and curled hands and Raynaud's although I was oblivious to it. The skin from my feet all the way up to my abdomen was thickened as was the skin from hands all the way up to shoulders. All this in 7 months. A year later I now have bowel issues but nothing else yet. Even though I have a diagnosis no one can tell me with any real certanty what will come next, I now play the waiting game.

     

    There are 2 types of systemic sclerosis limited(also known as crest but not everyone with limited have all the crest symptoms and may also have internal issues) and diffuse. Limited usually presents with Raynaud's, hardening of skin on hands, sometimes forearms, feet and lower legs. Almost always there are changes in facial skin and appearance. Gastro problems are common and other organs can be involved. Diffuse effects skin not only on hands, forearms, feet and lower legs but upper arms, thights and trunk. There is often systemic involvement effecting internal organs. Again this is textbook stuff and in reality different people can have different symptoms and combinations of symptoms of the illness.

     

    The difficulty as you know is that no single test can confirm scleroderma.

     

    While you struggle to find a diagnosis please continue to use this forum to vent. Incidentally I was initially misdiagnosed by one doctor who said I had leaking veins(has got to win prizes for most weird misdiagnosis) and then by 3 dermatologists who said it was necrobiosis lipodica, a diabetic condition.

     

    Take care.

     

    Amanda

     

    P.S. Would it help your cause if you took some sclero info such as leaflets that reflect your symptoms with you when you see a doctor next?

     

    P.S.S. Stape, a doctor told my sister that there was no treatement for scleroderma(what a way to be written off) she corrected him and pointed out there was no cure but there were plenty of treatments for me.


  6. Healthseeker,

     

    I am not on the immunosupressant you have been recommended but have been on one for 11 months now. I was concerned about side effects etc but to date I can't pinpoint any to the drug. It's Cellcept and in view of the recent warnings I spoke to my slcero nurse about coming off. She made a very valid point being how worse would I be without it left to the mercies of this disease unaided? In answer I would be much worse of than I am at present so I keep taking the pills.

     

    The important thing is to have regular blood tests that are monitored whilst you keep a watchful eye an your body should you decide to take the drugs.

     

    You know you best and will make the right decision for you.

     

    Take care.

     

    Amanda


  7. Hello Peggy,

     

    My hands are long gone and were by the time I got to see the rheumatologist. None of my fingers straighten and on my right hand the 3rd finger is completely bent. I am afraid it's too late for me now.

     

    Razz is right, start exercising now and wax baths do help with pain for both hands and feet.

     

    Take care.

     

    Amanda


  8. Hello Debbie,

     

    I am glad you find interacting with others helpful. When first diagnosed I made myself telephone the local society to talk to another scleroderma person. I was feeling like the only one and afraid of what was coming.

     

    I am sorry you have lost your husband and his support. You'll get lots here as there are people (not me) who have a wealth of info you will benefit from.

     

    You also have alot to be getting on with disease wise. My twin has follicular lupus and is losing her hair. She tries to compete with me but SSc (scleroderma) wins hands down.

     

    What ever question you ask someone here will have an answer so you're in good hands.

     

    Amanda


  9. Hello All,

     

    My rheumatologists use the term inactive and say the disease becomes inactive at some point, 3-5 years gets mentioned also. whether this means you then get thinks back like soft skin, joint movement or stay as is seems to be anyone's guess. My rheumatologist said skin softening is possible but that I may still be left with contractures and immobile joints. Explain to me the point of soft skin if nothing still moves properly!

     

    I presume once inactive you just wait and see what happens next and I think any further activity is then internal.

     

    A friend was told by our rheumatologist not to upset the apple cart so her disease stays inactive but did not expand on what that actually entails.

     

    Seems to be anyone's guess.

     

    Amanda


  10. This will be my last post on this topic I promise! :). As explained to me by my rheumatologist and then the scleroderma nurse (I have to be told things twice), about 6% of people with SSc have a negative ana and can't be diagnosed using a blood test alone. Apparntley I have an "atypical presentation" of this disease whatever that means. I think it's a polite way of saying I am an oddball.

     

    Take care.

     

    Amanda

     

    P.S. Today I ain't having a good day and I don't want to play anymore. I hope the rest of you are faring much better.


  11. Isobelle,

     

    I am afraid I won't be much help here because the morphea was intitally misdiagnosed as necrobiosis lipodica, a condition associated with diabetis and always leads to diabetis.

     

    I started out seeing dermatologists as initially the only issue was the weird patches on my shins. The first dermatologist I saw said it was either morphea or necrobiosis. She leaned towards morphea but was swayed by a colleague towards necrobiosis After that I saw other dermatologists who confirmed the misdiagnosis. When I finally went back to see the original dermatologist some months later she confirmed it was not necrobiosis lipodica but morphea.

     

    The other thing to bear in mind is that I had morphea a long time before seeing a doctor. The morphea apeared on one shin in 2003 but I waited until it appeared on the other shin, in 2006, before seeing a dermatologist so would not have been paying close attention to what else was going on in my body. Having said that with hindsight I can confirm that even before 2003 I had pains in my arms, wrists and hands, hip pain and supposed irritable bowel syndrome. It's only now with the scleroderma diagnosis that previous ailments fall into place.

     

    I recommend a biopsy because blood tests can come up negative as in my case. Either way I do hope you get some answers soon.

     

    Take care.

     

    Amanda


  12. Isobelle,

     

    I don't know if this will help you but I started out with morphea that after 4 years began developing into scleroderma systemic sclerosis, diffuse. I understand this is rare but according to my rheumatoliogist I am an atypical sufferer.

     

    I had a waxy, itchy patch of skin on my right shin that sat there for 3 years then started to expand. At year 4 it appeared on the other shin and began its descent to the ankles and feet. It appeared on my forarms and hands as then pretty much everywhere by which time it was clearly scleroderma.

     

    Perhaps a biopsy will confirm a diagnosis as blood tests can be inconclusive, I have a negative ANA but have systemic sclerosis nevertheless.

     

    Hope this helps.

     

    Amanda


  13. ;) Dear All,

     

    Remember as a kid watching disaster films and wondering who you would become? Would you be the hero, working class in a polyester suit who enters the burning building again and again. Would you be the brains cooly directing the wounded to safety whilst things explode in the background. Or the comforter tending to the bewildered. Perhaps the lucky escape who watches on realising the closeness of the call. Let's not forget the hysteric, screaming panic making every fist near enough to strike clentch from want.

     

    When the huge scleroburgh sunk Amandatanic in painful waters I got to find out which one I would become.

     

    I was the hero, smiling bravely whilst talking about the dreaded disease, how it may ravage my body in a matter of fact way confirming that I would carry on regerdless. I was the brains cooly informing managers and my staff of the situation and taking it in my stride. I was also the comforter assuring family and friends that all would be well and initially being told there was no internal involvement the lucky escape evaluating the close call. Mostly however the hysteric, one who is given to being hysterical overwhelmed with frustration whilst I adjusted to my limited mobility and the realisation that it may never return to what it was.

     

    Have I transended to the higher eshalons where the tedious. the hum drum, the ordinary have somehow become appreciated, praiseworthy, significant? No what sucked pre scleroderma still stinks now.

     

    I can't really say whether scleroderma has fundamentally changed me as a person, it won't be a full year until next month so it's a little early for me to evaluate. If I was brave I'd ask others.

     

    Life has changed though, 20 year career and dream job gone, social life gone, ability to be independent gone, ability to bathe/shower gone, ability to make plans gone, ability to earn an income gone, ability to be a domestic goddess gone.

     

    Despite all this I don't doubt for a moment that other things will come to replace what's gone......bigger, better,...... we can rebuild her!!!!!!!!!!!!

     

    Take care.

     

    Amanda ;)


  14. Hello All,

     

    How obvious is my screen name......do you think my name might be Amanda? How boring am I, actually I want to change it but don't know how.

     

    The only significant part is 23 which comes from August 23rd , the date of my 10th wedding anniversary to my hunnybee and, wait for it.............the day I was inducted into the scleroderma hall of fame!!!!!!! get down!!!!!.......well I would if I could but I can't so I won't and if I did I coudn't get up again.

     

    It was the day when Dr Garnett, rheumatologist to the Royal family, shook his head slowly and said "It's sclerodermaaaaaaaahahahahahahahaha!!!!!!!!!! You see unlike most people I had heard of scleroderma and seen what it can do to people as two weeks prior to my diagnosis I watched a film you will no doubt be familiar with called For Hope. When Dr Garnett said the S word all I could see was visions of the unfortunate woman's face from the film. When he then asked me if I had neck stiffness and could I pucker up I though Pal if I can't wave me bye bye as I fly out the window over your left shoulder as I know where this is going I've seen it.

     

    I'm pretty sure the migraine I had the following day was stress related. Needless to say I now have the film and my diagnosis in perspective.

     

    I think I might change my screen name to Oh boy Oklahoma! :lol::lol:

     

    Take care.


  15. Hello All,

     

    I am of the opinion that autoimmune diseases must be hereditary, I have 4 of which two are raynaud's and SSc, my identical twin has follicular lupus and fybromialga, my mother has fybromialga and raynaud's and my maternal grand mother had psoriasis. Cleary the gene pool of pain and death can't be a coincidence, can it?

     

    There must be a family predisposistion to autoimmune diseases the same as there is for cancer or heart disease.

     

    Well that's my theory anyway but as it's just based on my freaky family you're unlikely to find anyone else supporting it.

     

    Take care.

     

    Amanda :lol:


  16. Hello,

     

    I had the puffy hands and feet phase prior to the skin thickening and tighening. Puffy phase was approx May 06 to Feb 07 then the skin began to thicken from Feb 07 to August 07 and by that time I was so stiff and inflexible that I could hardly walk and could not even wash or dress unaided.

     

    I hope this helps although you must bear in mind that despite commonalities everyone experiences scleroderma differently, it's almost a tailor made disease.

     

    It's difficult to predict how long any phase will last or indeed what will come next. What will help you is what you have already found, the people of this forum who have a wealth of personal experience and encouragement to give you whatever phase you are in, however long it lasts and whatever comes thereafter.

     

    Take care :blink:

     

    Amanda

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