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Just a little update.....


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#1 mandyg

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Posted 30 September 2013 - 02:50 AM

Hi everyone, just a little update in case anyone is in a similar position and wondered what happens next! :)

 

I finally saw the Scleroderma specialist, Dr. Anderson, last week and she was so lovely and really helpful. I had spent the last three months (whilst waiting for my appointment) finding out everything I could about this disease so I could be as informed as possible and I must have done a good job as I didn't really find out anything new, but she was very reassuring and told me that that I am in the early stages of Sytemic Scleroderma (didn't say which type - not sure if it's too early to tell yet although I have SCL-70 and the Raynauds only started quite recently so I suppose that points more to diffuse?) and that I don't need any medication at the moment, but I will be very closely monitored and have another appointment with Dr. Anderson in three months time.

 

She gave me numbers to ring if I had any questions and sent me for another whole load of blood tests (ten tubes!! Ten!?) and an EKG (think that's what it's called - apologies if that's wrong - the heart trace thingy where they stick little stickers on your body and check your heart rate?) and she's also made an appointment for me to have the nail fold capillary test in a couple of weeks.

 

I had to see a different doctor for the results of my previous scans and tests (chest ct, chest x-ray and heart echo) and I was a bit anxious about the results of these, as over the last couple of months I've been having a bit of pain in the chest area when I breath in deeply, especially in the morning when I wake up, and also find I've been getting a bit more out of breath when I'm walking than I have in the past. But apparently all of the tests have come back clear so I'm a bit puzzled about that. The doctor said the chest pain could be due to stress, so hopefully it'll disappear now! :)

 

Anyway, that's where I'm up to in my little Scleroderma journey - just trying to get my head around what's coming next, but at least I know that when something does come up, it'll be caught early and I can get on with getting it sorted!

 

Thanks for listening and hope you are all having a good day,

 

Mandy



#2 Amanda Thorpe

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Posted 30 September 2013 - 08:41 AM

Hello Mandy

 

Welcome to the weird 'n' wacky world of scleroderma, I realise you don't wanna be here but at least you now have a diagnosis to hang your symptoms on and you're in good company!

 

I have never heard of not treating systemic scleroderma, especially diffuse so I would guess you must have limited? I checked up your consultant and she is a scleroderma expert so she must know what she is doing, to me, a non medical layperson, I still find it odd, when will they treat you, after damage has been done to your heart, lungs or kidneys? Treatment, in my opinion, should also prevent any involvement of the skin, gastrointestinal tract or internal organs.

 

When I was diagnosed with diffuse scleroderma I only had skin involvement, major at that, and I was immediately put on mycophenolate, an immunosuppressant, even though I had NO internal organ involvement at that time. I developed myocardial fibrosis and serious heart failure (like you'll die without treatment, serious) in year 3, what would have happened without the early intervention of mycophenolate I wonder? Anyways, you're having your yearly ECHO and lung function tests, just make sure you report any new symptoms straight away.

 

Yes, it's an ECG when they put the sticky things on you to check your heart. About your shortness of breath (SOB), this can be a symptom of something serious, it was my only symptoms of heart failure, and it can be caused by something relatively simple like being out of condition, something that easily creeps up on those of us with scleroderma as other symptoms affect our mobility. Just keep an eye on it.

 

I look forward to reading your posts and take care.


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#3 mandyg

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Posted 30 September 2013 - 10:20 AM

Hi Amanda, I wonder if I'm not being treated for anything as my symptoms are only very mild at the moment - hand swelling and stiffness/tightness (unable to make a fist or do a thumbs up - never know when that might be needed :D ), Raynauds (which is actually quite severe but I'd rather just try to keep that at bay by keeping warm - got some lovely silver gloves from the Scleroderma clinic so I can have the odd Michael Jackson moment too) and the SCl-70 anti-body.

 

It wasn't actually Dr Anderson who gave me the results of the scans - she didn't have them at my appointment on Wednesday as they had been done at a different hospital, but I had a follow up appointment with a rheumatologist at that hospital today so he gave me them. When I asked him if he was sure the CT scans were clear as I was having chest pain, he looked at me a bit oddly like I was making a fuss so I didn't want to push it any further. Didn't want him to think I was a hypochondriac! He also said that I would probably be scanned every two to three years in the future which worried me a bit. Then he asked if I wanted to be signed off as his patient as there didn't seem to be much point in seeing him AND Dr. Anderson, especially as she is the specialist in this field and I agreed. (Dr. Anderson said they would keep a close eye on me so hopefully that means scans a bit sooner than two to three years!!) If the pain is still there at my next appointment with Dr. Anderson in three months, I'll make sure I ask her about it, although are there any further tests that can be done anyway? If the scans say my heart and lungs are ok, they must be ok?

 

Been having quite a bit of indigestion over the last couple of weeks too which I have never, ever suffered with before but hopefully it's just a co-incidence?!

 

Sorry for the ramble - once I start, I can't seem to stop! :blush:



#4 Joelf

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Posted 30 September 2013 - 10:45 AM

Hi Mandy,

 

Thanks for your update.

 

I'm pleased to hear that Dr Anderson will be keeping a close eye on you; you should be having yearly checks for heart and lung involvement, but if you've got another appointment with her in three months time, then you can mention the indigestion problem then. It is quite helpful to make a note of any other concerns you might have, to discuss with her when you next see her.

 

I was in a similar position whereby I was having appointments every three months at the Brompton, now I see them every six months and the Royal Free once a year. I also see a local lung consultant as well.

 

Obviously it would be better if you didn't have Scleroderma, but once diagnosed, at least you know where you are and I think a fear of the unknown is worse than the disease itself!

 

Kind regards,


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#5 mandyg

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Posted 30 September 2013 - 11:18 AM

Hi Jo, yes weirdly, it was a relief to finally get a definite diagnosis - at least I know now what I'm dealing with and can prepare myself, well as much as any of us can! 

 

Thanks again,

 

Mandy



#6 Amanda Thorpe

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Posted 30 September 2013 - 01:15 PM

Hello Mandyg

 

There's a saying that gets bandied about on these forums "be your own advocate" and you are going to have to be, stuff what the doctor thinks. What's more important, your health or what someone thinks of you? Our natural tendency is to want to be liked and not to cause offense BUT that attitude can work against us, I am not suggesting that we become rude and crude but that we speak up for ourselves when WE think it necessary, blow what the doctor thinks!

 

I was diagnosed in August 2007, in February 2009 I had my first episode of internal involvement, my yearly ECHO showed a  left bundle branch block (LBBB) which is a defect of the heart's electrical conduction system, basically the left and right side of the heart were beating out of sync. BBB is common in the general population, can be asymptomatic and need no treatment, it can also cause major problems. At that time I had a phone conversation with a renowned scleroderma expert as I was concerned about the LBBB, he played it down and was not overly concerned but said it would be an idea to have a few other tests, after this I ceased to be concerned about the LBBB, after all the expert was not really interested so I didn't apply any urgency to sorting out the tests and let the matter drop. As time went on I became short of breath (SOB) and by April 2010 my SOB was so bad it restricted my activity, I had dismissed this increasingly worsening symptom, putting it down to being unfit, after all the LBBB was nothing to worry about.

 

My ECHO of April 2010 showed LVBBB had worsened, myocardial fibrosis, global ventricular dysfunction, and an ejection fraction (measures how the heart is pumping blood around the body) of 30-35%, normal is 55%. I was in serious heart failure and if I did not respond to treatment I'd be pushin' up daisies in about 2 years. Needless to say the treatment of a biventricular ICD (pacemaker & defibrillator) worked wonders as here I am but by the time they found the fibrosis it was too late to treat it as it was by then inactive, damage done.

 

In 2011 I did my first video, scleroderma heart involvement and did you know that heart irregularities are among the first symptoms reported by people with diffuse systemic scleroderma? I wish I had known in 2009 because you can bet I would have been more proactive. The LBBB was a red flag ignored, I should have been called in for an ECHO at 6 months not over a year later! Imagine my abject horror at being told how badly things had deteriorated and how ill I was when 14 months earlier I had basically been told my symptom was nothing to worry about!

 

If it concerns you pursue it.

 

Take care and keep posting.


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#7 mandyg

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Posted 30 September 2013 - 11:23 PM

Thanks Amanda, I will pursue it if it continues to be a problem - really don't think its "anxiety" as its not a sharp stabby pain coming and going, its just always there when I take a deep breath, worse in the morning - kind of takes my breath away first thing, if you see what I mean?!  I haven't got my appointment yet for the PFT so I'll chase that up if I don't hear anything this week. 

 

Thanks again to you and Jo for your kind and wise words.

 

Mandy