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What happens next?

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#1 mandyg

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Posted 21 August 2013 - 02:10 AM

Hello everyone and thanks for having me. I've been reading this forum for the past couple of months trying to understand this illness as much as I can, without, as yet, the benefit of speaking to a specialist and it has been really helpful so thanks for that!  Please excuse me if I ramble, it's my first post so I'm not really sure how much information is needed so I'll try to give it all but be brief.

 

I started with Raynaud's in Nov 2011 but about eight months later I noticed that my fingers were tight and swollen when I woke up in the morning. The doctor organised blood tests and xrays but these came back "normal" so I was sent on my way.  Earlier this year I noticed that along with the swelling, my hands were also going numb (even waking me at night sometimes) and I started to get pain up my arm into my shoulder so I returned to my doctor. She was a different doctor and couldn't understand why I hadn't had further investigations after the other tests came back normal (when obviously the swelling wasn't!) so she sent me for "specialised" blood tests.  The results from these showed a positive ANA and ENA and also positive SCL-70 and the doctor was concerned enough to send me to a rheumatologist who I saw within a couple of weeks. The rheumatologist went through my history and told me that in her opinion I had Scleroderma. She gave me the Arthritis UK leaflet on the subject and told me not to google it (which of course I did!!), and sent me for an immediate chest x-ray and told me that I would also be going for an echo cardiogram on my heart and a CT scan for my lungs/chest.  She also said I would need to see a specialist and would get an appointment in the next two or three months.

 

I have now been for all of the tests and have been called back for another CT scan as they wanted more images from a different angle, so I'm off to have that in a couple of weeks, then I have an appointment with Dr. Marina Anderson on 25th of September, then back to the rheumatologist on 30th September.

 

I have so many questions which I'm sure I will have answers too after seeing the specialist, but I would really like to know if anyone can tell me what will happen at that appointment?  Is it likely that I'll be prescribed some form of medication or does that happen if and when symptoms arise? I'm really confused and I've tried to hold off asking any questions on here until I see the specialist myself but these have been the longest couple of months in my life!

 

Any advice or information anyone could give me would be really appreciated and I apologise if I've used the wrong terminology or have given too much or too little information and I promise to try better next time. :)

 

Thank you in advance.



#2 Joelf

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Posted 21 August 2013 - 11:42 AM

Hi Mandyg,

 

Welcome to these forums!

 

I'm sorry to hear that there is a possibility that you may have Scleroderma and I can understand how worried and anxious you must be feeling. However, it does sound as though the second doctor you consulted was on the ball, has set things rolling for you and that you are set up with an appointment with Dr. Marina Anderson who is one of the  Scleroderma specialists on the link I've included. We do recommend that if possible our members consult a Scleroderma expert.

 

I've included a link to our medical page on Common Medical Tests for Scleroderma which I hope you'll find interesting and informative. I would advise that you make a list of questions to take with you when you see the consultant(s) and also it's beneficial, if possible, to take a friend or relative with you, as it can be hard to take in and remember all the information you receive (I dragged along my long suffering best friend to my first appointment with a local consultant and then my equally long suffering husband to the second appointment with a lung specialist.) As Scleroderma varies so greatly from person to person, it's difficult to anticipate whether you'll be given any medication at the first appointment; in my own case I underwent a barrage of lung tests at The Royal Brompton Hospital in order to establish the exact type of lung fibrosis from which I was suffering and I must admit my feet barely touched the ground before I was receiving IV infusions of Cyclophosphamide to attack the inflammation on my lungs quite aggressively. I would emphasise, however, that everyone reacts differently and the treatment which was very successful in my case, sadly doesn't produce the same results for everyone.

 

I've included another link for you to our page What is Scleroderma? and you'll find a wealth of help and advice on our medical pages on the main site and also on the forums. I'm looking forward to reading more of your posts and hearing how you're faring.

 

Kind regards,


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#3 mandyg

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Posted 21 August 2013 - 12:01 PM

Thanks so much for your reply; it's nice to know I'm not alone in this and these forums have been a great source of information so far.  I will have a good look at the links you suggested and writing down questions is a good idea too (although I think writing down the answers might be even better as I have a tendency to forget everything I'm told the minute I walk out of the consulting room - that could be where my husband comes in handy!)

 

Thanks again.



#4 Amanda Thorpe

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Posted 24 August 2013 - 03:41 AM

Hello Mandy

 

Welcome to the forums! It's impossible to say what you'll get at your first appointment because everyone with scleroderma is so different and your appointment will be tailored to your needs. It's good that you have already had your tests lined up as usually people have a lung function test and ECHO every year for the first 5 years, should you have any heart/lung involvement it will be sooner. You may also have a gastroscopy/colonoscopy if you have gastrointestinal involvement. Oh, blood tests, you will have plenty of those! :emoticons-clap:

 

I echo what Jo has said about the appointment, taking someone with you, make notes and take notes in with you so you remember what you want to ask and remember it's your appointment so don't hold back.

 

I too got the ARC leaflet at my diagnostic appointment, when I had tight skin most everywhere and could hardly walk, move my arms etc and had seen a film about scleroderma 2 weeks prior (For Hope - bad title as she snuffs it!) and knew what could actually happen to me. What did I have? A leaflet that said I should keep my hands warm!  Nothing about what the disease could do, life expectancy and so forth, nothing about what I wanted to know only that I should not put my hands in a freezer!

 

I have had scleroderma for 6 years now and unfortunately something has worsened each year :emoticon-crying-kleenex: but I still think I have a good life, true it's nothing like I thought it would be but that's not necessarily a bad thing. Life will be different for sure and there's nothing you can do about that but you can still have a good life and there's everything you can do about that. Being here is your first step!

 

Take care and keep posting.


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#5 mandyg

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Posted 24 August 2013 - 06:19 AM

Hi Amanda, thanks for your reply. The one thing I have figured out is that there doesn't seem to be any set pattern for how this disease affects people and everyone is different which I suppose is what's quite frustrating - not knowing what and when things might happen - if they happen at all!  I also realise that I'm really lucky in that I seem to have been diagnosed quite early on (although that gives me more time to worry!!) :nervous:  I really appreciate yours and Jo's kind words - it seems I have it very easy at the moment compared to the two of you and, I'm sure, hundreds of other scleroderma sufferers. Who knows what's around the corner - I suppose I just need to make the most of feeling fairly healthy at the moment! 

 

Thanks again and I'm sure you'll be hearing from me with further worries and questions and hopefully good news when I get the results of my tests at the end of September (had the first chest x-ray in the middle of June - goodness, it's a long time to wait to find out if it's clear!)

 

Thanks again,

 

Mandy



#6 Amanda Thorpe

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Posted 27 August 2013 - 03:03 PM

Hello Mandyg

 

Make sure you let us know the test results. You're right everyone with scleroderma is different which just helps to make it an even more bizarre disease! :emoticon-dont-know:  :emoticon-dont-know:


Amanda Thorpe
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