New Diagnosis

Hi everyone I have only just joined this great forum and can really empathise with niky257 and graygirl1 about the length of time it takes to get a proper diagnosis. I have been told that I have scleroderma and I am seeing my consultant on thursday. I have been feeling really perculiar today numb toes pain around my back. I wish I didn't feel scared about the future especially when you are all so supportive of one another I feel like a big cowardy custard!!!

Is it normal to feel like this I am sure I am going through a bad patch. Thanks for this great site.

16 Replies

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  • Hiya you have every reason to be feeling the way you are !

    I was diagnosed with diffuse systemic sclerosis (scleroderma) and raynauds back in 1997, age 24. With a speedy diagnosis, this illness can be stopped in its tracks, however there is no cure as yet, and so has to be regularly monitored. The first 5 years are the most aggressive and then it tends to plateau. Although it can re-emerge if it is not controlled properly !

    Have you checked out the info on the raynauds and scleroderma association's website ?

    raynauds.org.uk

    There is also a really good online eshop where you can find all your goodies which can make this diagnostic journey a bit easier ! as well as, I would hugely recommend that you join the association, as not only do you receive a quarterly newsletter keeping you up to date, amongst other bonuses, but you are also contributing to the funds for finding a cure !

    Good luck with your consultant. I am sure you will feel better once you have a treatment plan in place.

    keep us all posted on here how you get on.... 'may the force be with you', Living the dream :) x

  • Thank you so much for your kind comments. I suppose I feel so scared because I have had scleroderma for a long time but was always told it was typical raynauds blue hands/feet etc, I guess I am worried because I don't know what damage has already been done, honest I have pestered the docs for ages. Still can't change things now just hope they can help me.

  • ooo thursday .... you off to the clinic at the royal free ? if so, you definitely will feel better after you have been there as what they dont know about scleroderma, raynauds, and related disorders is not worth knowing ! Their dedication and hard work to their patients is outstanding ! :) x

  • Hi There, i know what you mean, i was told 2 weeks ago that i have scleroderma, at the royal free, have had raynards for just over a year, Wot next ?????????. but this web site is a great help.

    Rob

  • Yes thank goodness we are not alone. Good luck for the future.

  • We can live in hope :)

  • rob - Prof Denton and his team are awesome !

    You are very lucky to have such a wonderful supportive team looking after you !

    They have supported me throughout my 16 year journey, and literally kept me alive ! My initial diagnosis was given to me by a Dr at the QMC in Notts who told me I was lucky to be looking at a 15month life span and to give up on my dreams.

    At the time I was working as a medical rep in Nottingham and so was lucky enough to be around medics who told me to go and see Prof Black and Dr Denton, as he was then, at The Royal Free !

    Yes, the first few years were no walk in the park, but I knew, and know, that I have the best medical team trying their best to support and help me, and ultimately, want to see me get better and well.

    I am due back there in a few weeks and I am so looking forward to showing off my new found energy from incorporating natural juices by way of a juicer into my diet! as well as Prof Denton is the only person who gets excited about my hairy arms / wrists - I live to see him get so excited as apparently it shows that the skin has restored itself to normal functioning, which given it was like leather, I suppose a gorilla like arm is a small price to pay for that ! haha I probably am exaggerating a bit about being like an ape but I am conscious of them !

    How was your consultation with Prof Denton and co ? I know sometimes there is a bit of a wait, but as far as I am concerned that is ok since I feel to be so blessed to be under the care of such expertise !

    How are you feeling ? no worries if you do not want to go into detail, but seek comfort in knowing that there is a place here where we all understand if you want to share ?!

    As I posted in an earlier post to you - there is no cure yet, but it can now be controlled, which 20 or so years ago that eventuality was a hit and miss event. So here's to helping the medics / scientists finding that cure by being as proactive as we can in highlighting awareness along with the raynauds and scleroderma association! yep - living the dream haha ! :) x

  • I did wait 16 weeks to get seen at the royal free, lucky for me, i gave up with my own GP and went private to find out i had raynauds, i was then refered to him on the nhs in hertford, following my blood tests that then showed up the scleroderma.

    He then refered me to the royal free, but i put a lot of pains, and changes down to getting older.

    There is a lot to take in when you read about scleroderma, and what it may do to your body, and its hard to plan anythink at the moment, my hands are bad, swollen and sore, finger start go out of shape, skin is so dry, and my gut, lets no go there.

    I can only wait and see, and live in hope.

    Thank

    Rob

  • All the best to you Rob I know it is daunting you just have to go with the flow. Wishing you all the best. Deb

  • Deb, its hard to do, but dont let it get you down.

    Thanks

    Rob

  • Have you been started on any medication?

    if so do you mind sharing ? It takes a while for it to kick in but once it does your symtpoms will reduce if you respond to the medication.

    Took me 15 months of different immunosuppressants to hit the jackpot with 2mg cellcept (mycophenolate mofetil) per day for about 4 years or so.

    In March 2004, I achieved my dream of qualifying as a practising barrister and decreased the cellcept dose over the course of the next few months.

    Unfortunately my body could not keep up with the demands of my job, and although I truly loved my job, I wanted to feel better, more. I got off the Cellcept, gave up my job (temporarily...), returned to my home family town and have dedicated the last few years to restoring my body back to well being.

    This diagnosis is no walk in the park if it is ignored, but it can be made more tolerable by making lifestyle choices more suited to your condition, eg wear gloves to protect your hands; exercise your fingers as much as you can ( I often sleep on my fingers to stop them from curling as they naturally feel that they want to do).

    As well as, I use pawpaw lotion every night on my hands as I have seen amazing results on people whose hands have been totally fist like due to osteo or rheumatoid arthritis and after regular application of pawpaw lotion (they had to use a knitting needle at first to distribute the lotion in the crevices of the fingers) the fingers uncurled and restored themselves.

    I start my day by hydrating my skin in a bath of Oilatum Plus liquid parraffin and then I moisturise with Hydromol lotion. All of these products are easy to use with special hands so that is a bonus also ! as well as warms me up and eases the stiffness a bit.

    The first 5 years post diagnosis are the most aggressive and although there is no cure, there are treatments available which can suppress the autoimmune response. Unfortunately these carry their side effects and affect people in different ways.

    One of the other personal experinces I have learnt from this experience is that I have to stay away from drama or stress as this really aggravates my symptoms. which now that I am in the 16th year, will present themselves as total acid overload frequent trips to the toilet. You will learn to identify any foods which may be triggers also.

    There are lots of tips on this site for coping with the plethora of symptoms this autoimmune diagnosis can bring. As well as the Raynauds and Scleroderma Association site raynauds.org.uk

    Keep posting about your experience, as being a male with this diagnosis you are very special, as my understanding is that post menopausal women are the usual target group. Which at the age of 24 and just embarking on a career in law, having spent a couple of years in the pharmaceutical industry post graduation, I thought I was special with not fitting in with the normal stats !

    Once you respond to your medication, you will feel better, and I am sure the knowing that you have the best medical team behind you , along with the love of your family, as well as us all here, you will beat these symptoms :) x

  • i have been taking nifedipine 3 times a day for the last 4 to 5 months, but still cant controll the raynards , it can flare up from moveing between rooms ???? also taking naproxen 3 times a day along with 2 types of statins. after my visit the the royal free, im now taking vitaman c and e.

    My poor wife hashad to buy creams for the itiching, oils for the bath, creams for my body ,,,,,,, was told i need to put on 4 days a day, bit hard, i work in construction :) .

    the oils have helped, not so flakey these days, but fingers are starting to curl, not happy about that.

    got a lot of good info from the nurses at the royal on the skin care, it just hard trying to do it all, with work,

    Should get my new results back later this week form the blood test from the royal free, not sure if they will ring me or i ring them, or maybe i dont want to know ???.

    I have notice theres not to many men with this, wife does say im like a old woman LOL.

  • i know all about the old woman syndrome ! I used to joke about that, on my 30th saying I had a body like an 80year old !

    Anyway, it sounds that your current treatment regime of the nifedipine and naprosyn are not heavy duty enough (construction talk ;) ??), so I would suggest you make a diary of your symptoms whilst awaiting the result of your blood test and next appointment.

    It could be that they are waiting on the result to identify which type you have, as well as any kidney involvement, before starting you on a drug to help with your skin involvement. There are 2 types - limited and diffuse. I being me went for the full monty - diffuse type !

    Also Naprosyn can cause GI problems. I also used to take 1000mg vit c tablet as well as 800ui vit E for the first 7 years or so. Now I overload my system each day with a high vit c juice and later on a super green juice; made in my home made pharmacy, my kitchen with my juicer !

    i know what you mean about all the lotions and stuff and really once you get into the habit of looking after your skin taking the time to moisturise etc it will be as old hat as brushing your teeth ! Your skin will feel so much better for it.

    Yep I can turn blue from the temperature change of my kitchen to my lounge ! as well as I can go into overheat with very little warning ! all part of the being a human barometer experience !

    Keep yourself layered up, be kind to yourself, and seek comfort in knowing that your medical team know what they are doing ;) x

  • Thanks for your reply, I am seeing my rheum cons from my local hospital in milton keynes and I will definitely ask them to refer me to the royal free asap. Fingers crossed I will move forward soon. Good night hope you sleep well.

  • Ah I hope it goes well for you, and if they are willing you could ask to have shared care with Prof Denton at the Royal Free leading the treatment plan ! Sweet dreams to you :) x

  • anyone who suffers from raynauds we all dread the winter and cold weather with dread then April comes and our mood picks up with a bit of warmer weather most people are ignorant and think its just cold feet and hands there more to this illness low body core temperature fingers and toes in agony swallowing losing appetite reaction to medication sore joints dental problems and general worry keep the chin up everyone this is a great site

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