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Amanda Thorpe

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Posts posted by Amanda Thorpe


  1. Hello Smurfette

     

    It's nice to hear from you again although I am sorry it's because the botox didn't work out. It must have been a disappointing post to have to write.

     

    I can't offer any help I just hope you get some relief soon. Although I don't have your issues I can relate to being sick and tired of being sick and tired.

     

    Take care.

     

    Amanda


  2. Hello Suzie

     

    I have diffuse SSc and am into my 12th month on Cellcept which has worked well for me so far and I can't pinpoint any side effects. I had no lung/heart involvement at diagnosis and as far as I know still don't.

     

    I was on prednisilone 7.5mg but cut it out as I did not like the idea of the side effects and I was only on it for itching (maddening but not life threatening) anyway.

     

    Hope this helps.

     

    Amanda


  3. Hello Lotokids

     

    What a difference between doctors! I am glad you are making progress with treatment.

     

    I found out about a murmur by reading my copy of the rheumatologists letter to my general practitioner and was somewhat surprised by it. As it turns out the echo confirmed there is NOT a murmur but I sound like I have one. Weird.

     

    Keep us posted and take care.

     

    Amanda


  4. Hello John

     

    You've aready been warmly welcomed so you are definitely one of us now. I like that in the face of amputation and ulcers you say it could have been a more serious disease, can't think of one myself though!

     

    All I can say just over a year in myself is hang on, you're in for the ride of your life that goes down down down then up up up then who knows until it plateaus!

     

    Emotional support can be found on this forum as there are so many people living day to day with different issues of the same disease, someone else will be able to relate to what you are feeling, will and have felt. Thankfully people here will openly share to help others. It's a great resource.

     

    The medical information is first class also and there is a list of leading sclero experts for different areas worldwide.

     

    Keep posting and take care.


  5. Hello Tabitha

     

    Glad you've joined us here on this forum, you'll get great advice and support here, you've already got some useful links to look at.

     

    I have diffuse scleroderma systemic sclerosis (SSc) as a result of which my mobility has gone to pot and my bowels no longer realise that they are actually suppoed to fulfil a useful purpose.

     

    You don't have to have shortness of breath, blue fingers, lack of saliva etc to have scleroderma, I don't have any of these. It is a unique disease in that it effects everyone differently although there are similarities and unfortunately it is impossible to predict anyone's disease progression. None of us knows what symptoms we are going to get until they arrive. Although it's incurable it is treatable.

     

    Sorry your sister is dealing with ulcers I have not had any but realise from reading/talking to others that they are horrible and painful.

     

    Please keep posting and I hope this helps.

     

    Take care.

     

    Amanda


  6. Hello Smac

     

    I think what you actually need is a nice cianti and some fava beans.

     

    I'd need more than happy pills for a MRI, I crawled out of a CT scan of the abdomen because the big donut thing was gonna be over my face. Ended up with a scan showing half a liver and I pointed that was better than none. In the end I laid on my front so I could see out into the room and not the big donut thing.

     

    Its nice to know others have issues with this sort of thing.

     

    Hope it goes well for you as do the results.

     

    Take care.

     

    Amanda


  7. Hello Jess

     

    Sorry the doctors have done more to cause distress than anythig else! I have SSc which began as morphea and have experienced rubbish doctors along the way.

     

    Have you tried contacting any of the sclero experts listed on this site to see if they can direct you?

     

    Take care.

     

    Amanda


  8. Hello Snowbird

     

    I have Raynaud's and only knew because I was told at diagnosis and this was confirmed with the nailfold capillary test and hand warming test. My hands have never gone blue, my feet have started to but not too bad and I don't get a great deal of pain.

     

    As always anything to do with sclero, here secondary Raynaud's, can vary greatly from person to person. Presumably tests would confirm the diagnosis for you.

     

    Hope this helps.

     

    Amanda


  9. Hello Jaxs

     

    Ah yes the weight issue. Just prioir to becoming ill I put lots of weight on, went from a UK size 10 to a 16. As the illness progressed I lost weight and went down to a size 8. I then began putting it on again to a size 10 BUT it's mainly around the middle.

     

    I never used to carry lots of weight there, the big ole butt was the fat magnet. If I went round the corner too fast my butt would still be at the starting point waiting for me. Now it's the middle weight that gets in the way leaning over! What's that about.

     

    I think this illness and no doubt medication effects our weight, gain or loss.

     

    It does suck that we live in a society where weight is such an issue particularly as we with sclero have enough on our plate thank you. We are beautiful in every single way.......................

     

    Take care.

     

    Amanda


  10. Hello Sarah

     

    Welcome to the ISN forum, you are in the right place to get expert info and first hand advice.

     

    I have diffuse systemic scleroderma, diagnosed just over a year ago and would have loved to have had access to this site then!

     

    We look forward to getting to know you better when you feel ready.

     

    Finally, You mentioned a marathon, obviously I know nothing about it but maybe you could raise moneyf or ISN? :lol: Just a thought.

     

    Take care.

     

    Amanda


  11. Sorry Celia

     

    Would a heat pack on the shoulders or base of the neck (if that's where the pain is raidiating from) help along with a deep heat menthol rub?

     

    I hope you get some relief.

     

    I like the title of your topic "Pains anyone?" No thanks I've got enough of my own!

     

    Amanda


  12. Dear Lost

     

    Alcohol in the mix makes things more difficult as you already know. Did your wife drink heavy prior to being ill/diagnosed or did it start after? If before then the diagnosis has given her a reason and permission to drink to excess guilt free but is not the cause of the drinking. That cause was already there. If the drinking began in response to the diagnosis it may still be a sympton rather than a problem in its own right.

     

    My husband and carer has some 35 years experience as a well respected (awarded by the Queen) addiction counsellor. The offer to speak to him on all topics is available, just title the email to me Private and it will be read by him only.

     

    Keep posting and take care.

     

    Amanda


  13. Hello Maria

     

    Glad you have a good doctor and plans afoot for future treatment.

     

    My hands are in a poor way (ahhhhh) I have contractures on every finger because of which they are bent over at the middle joint and I have tight skin which is why my wrists don't move.

     

    When at work I used a computer all day and I could not do that now. What you will be able to do/not do remains to be seen.

     

    Lisa and Sam are absolutely right, exercise the hands now using a recommended routine. A lot of people find that by the time they get treatment the damage to the hands is already done.

     

    Take care.

     

    Amanda


  14. Hello All,

     

    Interesting article.

     

    It was very important to me that I did not make a mess of things because of what had been allowed to come my way, the SSc diagnosis. I wanted to manage it and the huge changes to my life with integrity, honesty and most important of all (in my opinion) a real sense of fun and humour.

     

    We and our illness don't live in isolation, our behaviour impacts immensley on those around us so it should be a positive impact.

     

    Weird this should be a topic today as I just spent time with 2 sclero sufferes and we concluded that living with a chornic illness can actually be a positive experience bringing out abilities/determination you never knew you had.

     

    You don't choose to be ill but you do choose how to live with it.

     

    Take care.

     

    Amanda


  15. Hello Smanda

     

    I was diagnosed in 2007 with diffuse scleroderma I had then and still have a negative ANA. My capilaroscopy did not show major changes although enough to merit a diagnosis of raynauds. My raynauds did not come as a first symptom either it was diagnosed same time as the sclero, I'd never heard of it the sclero I had.

     

    According to my rheumatologist I am atypical in presentation, then again lots of people are atypical when it comes to presenting with scleroderma which is one reason it's such fun getting it diagnosed. Added to that is the point GocartMozart made which is no one tesr can rule scleroderma in or out.

     

    At present you have not been diagnosed with scleroderma so I would suggest that you carry on regardless by which I mean live your life in the meantime, making the adjustments you need for the raynauds. You may never hear the dreaded S word from a doctor then again you may hear it next week, the fact of the matter is no one knows and no one can do anything to effect the outcome either way.

     

    It's helpful if you can draw a fine line between being your own advocate, knowing your body ain't quite right and pursuing matters accordingly whilst living life without unnecessary focus on every little twinge.

     

    In the meantime you can be sure of the support and first class advice you will get from this forum :lol: . Please keep us posted.

     

    Take care.

     

    Amanda


  16. Hooray for ISN particularly this forum. I wish I had found it earlier, when first diagnosed as it is so helpful to interact with others.

     

    The knowledge contained on this site is awesome and a big thank you to all the volunteers who keep it going for love not money.

     

    Thank you!

     

    Amanda


  17. Hello Lost

     

    Your post is a real cry from the heart, I am so sorry for you and your wife, particularly at present for your emotional pain.

     

    My husband is my best friend and carer. There was a period of months when I was totally dependant on him and it was a great relief to me that work was going well for him and that, my illness and its impact aside, his life was good. It was one less burden for me knowing that his work environment was a good one and he was getting some time away from my illness.

     

    It's natural and understandable that you don't want to see your wife suffering but she is and so are you. You know she is and she knows you are. Rather than let guilt escalate and misunderstandings develop talk, both tell the other how each is feeling. Your wife may already have an idea how you are feeling and she may feel guilty herself for being ill and having to rely on you.

     

    It sounds as if you are a loving couple and this being the case scleroderma is going to be no match for the two of you. Initially there is shock then comes the game plan as the two of you carve out a new life for the three of you. I know it is harder right now than you ever though life could be but it does get better.

     

    Carers often get overlooked, no one ever asks my husband how he is, but you suffer as much as we do, just not physically.

     

    I don't know what support there is for you locally but if there are any scleroderma groups it would help your wife to talk to other sufferers and maybe other carers for yourself.

     

    You will get great support here on this forum so please continue to share with us as we want to support you and your wife.

     

    If you want to talk to another carer send me a private message and I will pass it to my husband to answer. Your wife can email me direct if this helps.

     

    Take care.

     

    Amanda


  18. Hello Juanis

     

    Welcome and I look forward to hearing more from you when you are ready.

     

    Clearly you have alot to contend with and all on this forum will do all they can to help and support you.

     

    Take care.

     

    Amanda


  19. Hello Nina Lynn,

     

    I never had kidney pain with the interstitial cystitis (IC) and it being a breech in the GAG lining of the bladder as opposed to an infection like standard cystitis I don't know how it could effect the kidneys. Your kidney pain was attributed to this initially but with systemic sclerosis (SSc) now in the mix it's worth making sure this was a correct diagnosis as SSc can effect the kidneys.

     

    With the arm problem I have not spoken to the rheumatologist about it yet as it has come up in between appointments, I see him again end of November and will discuss it then if it is still an issue. If he comes up with anything specific I'll be sure to pass it on.

     

    Take care.

     

    Amanda


  20. Hello All

     

    I am into my 7th side effect free month of Cellcept. My rhuematologist mentioned 1 to 3 years and when the disease plateaus and becomes inactive Cellcept will stop. This then assumes the disease plateaus and becomes inactive in 1 to 3 years but I have also been told this period can be 1 to 5 years. Guessing then you could be on Cellcept for 5 years.

     

    It must be a drug that can be used indefinately because organ transplant patients use it and they nust be on it for years or forever.

     

    For myself I will be on it until the disease plateaus which I hope will be within 3 years.

     

    Take care

     

    Amanda


  21. Oh Georgie I didn't know your doctors could drop you, that's outrageous, particularly when they're doing squat and getting paid for it! No wonder all the smart kids in the playground wanted to be doctors.

     

    It's rotten that you feel so ill, know what ails you and yet still await relief.

     

    Your health is worth perservering for, do whatever works for you and keep us informed. You are part of what makes this forum unique, someone prepared to share their difficulties with others.

     

    Take care.

     

    Amanda


  22. Hello Nina Lynn

     

    I am sorry your diagnosis is now definatley scleroderma but at least you now know what you are dealing with.

     

    As Peggy said you had a thorough working up which is always a good thing.

     

    I don't know about the hair loss as I never had that symptom. I can relate to the numbness at night although I get it in the hands and feet, most annoying as it's already hard enough to sleep in anything near comfort.

     

    Sorry I don't have any suggestions because that's what you have actually asked for! :unsure:

     

    Keep us informed and take care.

     

    Amanda


  23. Hello Sam

     

    How great to hear from you again, despite your difficulties you are always hopeful. I am also impressed because those areas of the house you clean twice a year, I have no doubt I never clean!

     

    Moving house is a stressful endeavour but I think moving on is always a good thing and there is always the excitement of a new home. I hope it goes well for you.

     

    I also hope you get your disability resolved, when you are battling ill health you don't need to battle for something you are entitled to nor do you need financial issues in the meantime. As I said to the phone company when they pestered me "I didn't wake up one morning and think hmmm I'm bored so I know what I'll do I'll get a rare, incurable, debilitating disease so I can't work anymore!" They didn't see the humour in it needless to say.

     

    Take care.

     

    Amanda

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