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new here, painful hands, fingers twisting, crest?


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#1 Xenia

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Posted 20 December 2013 - 02:53 PM

Hello

I'm new here. My GP thinks I may have CREST and I've been referred to a rheumatologist.

For the past two years, I've been having pain in my hand joints and my fingers are becoming twisted. Small nodules are forming on some of my finger joints. My right wrist has been painful from time to time (since my early twenties!) and now my left wrist hurts too. At night or in the morning, my fingers feel swollen though they don't look as swollen as they feel. Sometimes the skin feels itchy.

Surprisingly, my hand x-ray came back 'normal' - I don't understand how that can be, neither does my GP and that is why he has referred me.  My blood tests also came back 'normal' - perhaps I'm someone who tests negative for CREST but still has it. (Test showed it's not RA either).

Other symptoms are difficulty swallowing, hair loss, very cold hands and feet.

I'm just wondering what to expect from my appointment with the rheumatologist on Monday. I'm worried about my fingers becoming more deformed - just doing simple household tasks can make them hurt, eg. if they are forced to bend too much in one direction. Is there medication I can take to prevent further deformity? At what point are you given meds?

Thank you for taking the time to read this. Could anyone with similar symptoms perhaps share their story?

 

Thanks

 

 



#2 Joelf

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Posted 20 December 2013 - 11:15 PM

Hi Xenia,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with pain and swelling in your hands and fingers and I can really empathise, as I know how debilitating it can be, as I also experience similar problems with my hands.

 

I've included a link to our medical page on  Hand and Joint Involvement which I hope you'll find informative. Although you have been referred to a rheumatologist I've also included a link to our list of Scleroderma experts, as we do recommend that if possible, our members consult a Scleroderma specialist to deal with this complex disease.

 

Regarding your blood tests, it's very possible to have the symptoms of Scleroderma without having positive blood tests and vice versa, as many of our members can testify. Also I know myself that the first lot of blood tests I had done by my doctor came back negative; it was only when I was referred to a lung hospital (I have lung involvement) that more specialised blood tests were carried out, which threw up some interesting results! In the beginning I had bi-lateral carpal tunnel syndrome and my hand xrays, like yours, came back showing only a little osteoarthritis, so you can see that often these tests are not necessarily conclusive; a correct diagnosis should really be made on a combination of clinical symptoms and tests, The medication I take does relieve some of the discomfort from my hands and wrists, but they still play me up, particularly if the weather is damp and cold (which it does tend to be a lot of the time; I use that excuse to explain my dreadful typing!! ;) )

 

Please let us know how you get on with your appointment on Monday and I do hope that your rheumatologist will be able to suggest some medication to relieve the discomfort and pain you're experiencing.

 

Kind regards,


Jo Frowde
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#3 Amanda Thorpe

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Posted 21 December 2013 - 09:37 PM

Hello Xenia

 

Welcome and I echo Jo in that a scleroderma expert is best when there's even a hint of scleroderma as they are best to give or take away a diagnosis. Scleroderma is a complex disease and knowing about it and thinking you know about it are two different things. It is also important you get the right treatment at the right time and you need the right diagnosis to achieve this.

 

Most people with systemic scleroderma have some sort of hand involvement like edema or Raynaud's but not many have sclerodactyly (see photo gallery, main category, skin involvement and pics 919 and 676 are my hands) I have sclerodactyly as the photos show, I would normally put the link in but am having a glitch at the moment.

 

Anyways, if sclerodactyly starts, whether you can prevent it is a debated issue here. Some say that with splints, therapy and some determination you can prevent it others, like myself, say once it starts it's inevitable. Mine began about 4-5 years ago and is still progressing even now albeit very slowly now. I don't believe any time in splints or therapy would have stopped what's happened to my hands but then I guess I would say that wouldn't I?

 

Take some time now to prepare for your appointment, write down your questions, take someone in with you and treat yourself afterwards and of course come back and tell us all about it!

 

Take care.


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#4 Xenia

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Posted 23 December 2013 - 12:43 PM

Hello Joelf, Amanda,
Thank you both for your messages - it was great to get your feedback before my appointment. I saw the rheumatologist today....and to cut a long story short, he thinks it's probably osteoarthritis but is doing some additional tests to rule out Crest.
The funny thing is, my GP thinks I'm too young (I'm 38) to have OA. The rheumatologist said he needs to see some abnormal blood results to make a diagnosis of Crest (he didn't agree when I mentioned some people test neg for it but anyway, that's just his opinion). My blood is being tested for: U&E creatinine, liver function, CK, CRP, IgG, A&M, ANA, dsDNA, FBC and ESR.

Thank you Joelf for the list of scleroderma experts, I have the name of my nearest expert. Basically, I'm going to wait and see what these tests show and go from there. If they come back neg, I will accept the OA diagnosis unless I begin to experience any other symptoms. If they're pos, then I'll be back on this forum.
Thanks again for your help & Happy Holidays xx



#5 Amanda Thorpe

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Posted 02 January 2014 - 05:55 PM

Hello Xenia

 

I wonder what your rheumatologist would make of me, negative blood work, normal rheumatoid factor and diffuse systemic scleroderma. Perhaps you could refer him here to my video diagnosis of scleroderma (would include link but techy issues) which explains blood work is used to support a diagnosis not to rule it in or out, something most scleroderma experts know which is one reason why we suggest people see one.

 

I find it worrying this rheumatologist is dismissing scleroderma only because of blood work and is going to treat you for something else, symptoms are more important! Keep an eye on your hands and if they look sclerodactyly like see a scleroderma expert please.

 

Take care.


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#6 Xenia

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Posted 03 January 2014 - 12:18 PM

Hi Amanda

Thanks for posting again. It was nice to hear from you as unfortunately I can't really talk to anyone in my life about this. My GP first mentioned CREST back in September and since then I've found it difficult to concentrate on anything else. When I took my baby to see the doctor a few weeks ago, the doc told me he has now changed his mind and that what I have 'is probably nothing at all'. Naturally this is ridiculous because your fingers don't just twist and become deformed for no reason.  When I got home, I actually checked the General Practitioner register to see how long my doctor has been qualified because it annoyed me that he would make such a sweeping, uninformed statement like that. (He qualified seven years ago).  I hadn't seen the rheumatologist at that stage so we didn't discuss CREST any further.

 

I agree wholeheartedly with you that it is strange/worrying for a rheumatologist to dismiss CRESTpurely based on bloodwork. I mentioned that I had read some people can have negative bloodwork and he seemed to think this was impossible, in fact he looked like he had never even heard of this idea before. Unfortunately, I felt I didn't have enough information myself to be able to discuss or 'argue' it further with him. In the back of my mind I just decided this was his opinion and that if I wasn't happy or still concerned, I could get my GP to refer me to the scleroderma expert on Jo's list. Why is it that I was able to read all this stuff online about people testing negative and my consultant who sees people every day with all kinds of rheumatic diseases, is a trained medical professional and he maintained something out of the ordinary needed to show up on bloodwork before he could make a diagnosis?  He said he could diagnose someone with rheumatoid just by looking at them, however he could not do the same for CREST patients. (I wonder if it's perhaps because he's not an expert in this field). He reckons I have osteoarthritis (OA) and for the most part, I agree with him. Without going into all the details, basically I fit the description of OA on the NHS website. I tick all the boxes there.  But then I wonder why my right wrist has always hurt and is not as flexible as my left one.  Surely, OA did not set in at the tender age of 20?

 

What sort of things should I look out for with my hands? Do you mean I should watch for them becoming claw-like? I looked for the photos of your hands but couldn't find them in the gallery.  I still haven't had the results of my blood tests and am assuming it's because of the bank holidays over holiday and new year. The rheumatologist said he would write to me regarding the test results, hopefully he will also mention whether I'm to get any sort of treatment or to go back to my GP. I'm going to sign off for now, I hope you (and Jo) are doing as well as can be expected, take care x



#7 Joelf

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Posted 03 January 2014 - 02:04 PM

Hi Xenia,

 

Sadly, your appointment with the rheumatologist emphasises the need to consult a Scleroderma specialist, as the average rheumatologist seems to lack the knowledge and expertise to deal with such a complex disease as Scleroderma. My long suffering general practitioner admits that I probably know more about the ins and outs of the disease than she does, as she has only ever treated one other patient in her career who had Scleroderma and one of my simple pleasures is to tell her how to do her job!!  ;) As well as my consultants at The Royal Brompton Hospital (I don't tell them what to do!! ;)   :P  ) I also see a rheumatologist at The Royal Free Hospital, where thankfully they are experts in their field and do know all about the idiosyncrasies of the disease.

 

I've included a link to Amanda's super video about Sclerodactyly which I'm sure you'll find very helpful and I've also included a link to a couple of photos in our Photo Gallery.

 

Please do let us know the results of your tests when you receive them.

 

Kind regards,


Jo Frowde
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#8 judyt

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Posted 03 January 2014 - 02:30 PM

Hi Xenia,

 

Just a quick comment, that I have a friend (who happens to be coming to visit today, just by co-incidence!!) who had OA in her twenties.   She gave birth to twins at about 22 and that was the start of the OA as far as I can remember, will ask her later when she is here.

 

Anyway, obviously OA can start that early and she has the deformed joints to prove it.   However, the OA went away after a few years and she is now fine apart from the obviously damaged knuckles.

 

Judyt



#9 judyt

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Posted 05 January 2014 - 12:16 PM

OOps I think I have made a blue here :emoticon-dont-know:  When my friend arrived and I asked her about her experience of arthritis she corrected me.   Hers was Rheumatoid Arthritis which came and went when she was young, I knew that really but got off on the wrong track.   Sorry

 

Judyt



#10 inkedup

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Posted 06 January 2014 - 10:40 AM

I've had OA since my early twenties due to hyperflexibility in my joints ( a strange combination with Scleroderma!). The thing is, we are all individuals, and do not fit into the same mould! I would have thought however that OA would show up in the x rays, it is fairly easy to see in an x ray and is not particularly insidious. I would suggest you have your thyroid checked out, as the cold, hair loss etc could easily point to this, I have this also and it is common, but has horrible symptoms.



#11 debonair susie

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Posted 25 January 2014 - 03:06 PM

Hi Xenia,

 

My sentiments are as Jo and Amanda's.

 

It can be very frustrating to be experiencing such symptoms and yet not receive affirmation or confirmation of SOME sort. I REALLY empathize with you, as I'm sure so many (members of this forum) can.

 

I sure hope that you are able to get somewhere very soon, with regard to your symptoms. In the meantime, I'm sending :emoticon-hug: s your way!


Special Hugs,

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