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#21 Amanda Thorpe

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Posted 21 June 2012 - 03:30 PM

Hello Cornishgirl

A well informed patient is only perceived as telling a doctor what to do if the doctor has an ego issue. You ask what you want to ask, it's you appointment, it's nice when we can have a rapport with them but it's not the aim of the appointment. Don't be hurried, if necessary point out that waiting patients are not your problem! I am sure it will all go well and can't wait to here that it has.

I have no idea how you explain connective tissue disease to family/friend, apart from my husband they're not interested, well Ma is but the to much!

Take care.
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#22 Joelf

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Posted 22 June 2012 - 12:22 AM

Hi Cornishgirl,

I'm afraid I do have a tendancy to tell my doctor how to do her job (she's very long suffering) but she admits that I probably know more about Scleroderma than she does (which is probably true! ;)) I wouldn't attempt to tell my lung specialists their jobs, but having said that, I do know my own lungs and I've recently had a bit of a flare up, necessitating my increasing the amount of prednisolone I take. When I see the consultant next month, I'll tell her what I've been doing, bring the results of a recent lung function test with me and see what she thinks about it.

Judy's suggestion of writing down all your queries is a good one and if possible it does help to take another person to the consultation with you as sometimes the stress of the situation can mean that you miss vital information. Don't be afraid or intimidated into not having all your queries answered; you're entitled to a full consultation no matter how long it takes!

As far as explaining the disease to my family and friends goes; at first everyone was very intrigued. However, after my having done the subject to death, they became extremely bored with hearing every minute detail of my symptoms and treatment (I began to notice glazed eyes, yawning and a strong desire to be somewhere else! ;)) and as I have no intention of committing social suicide, I now only mention it if I'm specifically asked!! :lol:

Do post and let us know how you get on with your appointment on Monday.

Kind regards,

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#23 cornishgirl

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Posted 25 June 2012 - 11:32 AM

I'm back from the Sclero specialist in Bristol - he was very nice. He looked at my nailfolds and I do have dilated capillaries so he has ordered blood tests. Back to see him at beginining of Sept - obviously he is in demand as that was the next available appointment. Will let you know the outcome when I know!

#24 Amanda Thorpe

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Posted 25 June 2012 - 03:13 PM

Hello Cornishgirl

September?? Must be good! Keep us informed and take care.
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#25 judyt

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Posted 25 June 2012 - 03:36 PM

At the risk of being a wet blanket, I just want to add that it is summer time over there and specialists are just as likely as any of us to want a summer holiday!?

Sometimes when I have expressed disappointment about a long wait for an appointment the answer has been "he's on leave for two weeks"

Anyway, all that aside, it sounds as though your 2 hour journey was worth while, and once you get your test results you will hopefully find that something starts to make sense.

Best wishes
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#26 cornishgirl

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Posted 26 June 2012 - 12:46 AM

September is a long way off but he said if the blood tests showed anything urgent he would contact me asap, which is reassuring. He works closely with Prof Denton on research projects/clinical trials so he has good credentials! He thinks the likely outcome will be putting me on a vasodilator - although I know they have horrible side effects so bit worried about this. Maybe try Plaquenil as well for the joint pain and fatigue. Also will have yearly LFT and Echo.

He told me being anxious would really not help my health so I will have to try my best to remain level headed. As he said himself, treatments are getting better all the time and we have to deal with symptoms as they arise.

Oh and he told me to go and buy some Evening Primrose Oil capsules?!

Final thing, I would like some good ideas for combatting Raynauds. I know keeping my core body warm is key so maybe some thermal underwear is in order. Can anyone recommend any **heat pads, special gloves, supplements (I can't take Ginko Biloba as on anti depressant for anxiety) or anything else that might help.** Anyone had any good results with biofeedback??

Thanks

**[Moderator note....Please PM any brand names to Cornishgirl - Thanks!]

#27 Joelf

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Posted 26 June 2012 - 06:20 AM

Hi Cornishgirl,

It does sound as if you've had a very satisfactory appointment with the Scleroderma specialist and it's good to be dealt with by someone in whom you can have confidence. It's absolutely true that anxiety does not help immune problems (or any health problems, come to that!) but it is easy to say that (don't I know it!! ;)) I know the thought of having to take a vasodilator is a bit scary; I don't have to take that particular medication, but I know when I was first told about the other powerful drugs I would need to take I was very worried (this was the person who wouldn't even take a pain killer for a headache preSclero!!) so I can understand how you feel. However, I consoled myself with the thought that if I didn't take them I would be very ill or worse, might die, which I find tends to concentrate the mind wonderfully!! ;)

Prof. Denton also advised me to take Evening Primrose Oil capsules when I saw him! I've included links to our Raynaud's Treatment page, our supplement page, a very useful thread about Raynaud's Medications and also an article on the Effect of biofeedback and deep oscillation on Raynaud’s phenomenon secondary to systemic sclerosis: results of a controlled prospective randomized clinical trial. which I hope you'll find helpful and informative.

Although it may seem a long time to wait, I think you'll find September is here before you know it (judging by the way this year is already galloping away!! ;) )

Kind regards,

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#28 cornishgirl

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Posted 26 June 2012 - 08:07 AM

Just read the supplements page and wonder if I'm doing the wrong thing by taking all the supplements I do: Omega 3, Magnesium, Vit E, Vit D, Iron with Vit C and now Evening Primrose. I did tell the doctor what I was taking and he didn't tell me stop taking anything but wondering if perhaps I should?

#29 Joelf

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Posted 26 June 2012 - 08:37 AM

Hi Cornishgirl,

The most important thing to know about supplements and scleroderma is that the immune system does not need to be improved in scleroderma, because it is already overactive.

You did mention to the Sclero doctor about the supplements and he didn't advise against taking them. I don't have any medical training, so can't really advise you, but I must admit I don't take most of the supplements that The Royal Free suggested; one of the reasons is the cost; they can work out quite expensive and I didn't feel I was really benefiting from a lot of them. The Brompton recommended a lung supplement which I do take; however, I tend to follow exactly what The Brompton suggests (if they say "Jump!", I say "How high?" ;) ) Also I feel I take enough medication as it is; my poor liver hasn't really forgiven me!

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#30 judyt

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Posted 26 June 2012 - 03:03 PM

Hi Cornishgirl,

I am interested to read that you are afraid of taking vasodilators because I found them no trouble at all, except for the one I used to take for migraines as a subcutaneous injection - that could be horrid for a few minutes.

Once you have the medication sorted, or even before I guess, the question of clothing is the next most important. Over the years I have regularly worn several layers almost all year round. First I would wear pantihose and a cotton or silk vest, then thermal leggings and long sleeved thermal top, lightweight merino or other wool turtleneck and wool or polofleece trousers then last of all a wool sweater or polofleece top. I know it is summer there now but a friend who has just returned home says it is as cold there most days at the moment as it is here at the moment in mid-winter.

I have found that wearing natural products is often better than synthetics, except for the thermals which have been designed for arctic conditions!! Merino wool products are great because they are machine washable (carefully) and light to wear. What we call polofleece is a synthetic but it is slightly water repellent so good for those very damp days.

As Jo says, you need to think a bit about your poor old liver, it is vital for survival and with our disease it can get a hard time dealing with whatever is going on without also having to process too many extra supplements. More than one of us here is dealing with chirrosis for one reason or another so being aware of that is important. I myself have gone through several decades of deranged liver function and now have portal hypertension which is caused by chirrosis.

Now that I have told you all that you probably feel like going and having a lie down!! But I think it is important to know why you should do this or not that, so asking questions is the best way to find out. Maybe when you know the why of things you will find it easier to be less anxious about everything.

Try to go with the flow, what will be will be, so you might as well just do your best for yourself and your children.
Love and best wishes

JudyT

#31 cornishgirl

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Posted 28 June 2012 - 09:18 AM

Thanks for the advice Judy and Jo. Having a bit of a bad day today I'm afraid - which I guess is natural in the early stages of seeking a diagnosis. Ended up crying in front of my boss - not a good look! I think tiredness has a part ot play - 5 yr old has chicken pox and 2 yr old just doesn't do sleeping at the moment so I will put it down to that. Lets hope tomorrow is a better day, or at least less waterworks on my part.

#32 Amanda Thorpe

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Posted 28 June 2012 - 11:04 AM

Hello Cornishgirl

Regarding the supplements, it may well be the consultant didn't pick up on all of them (?), not a criticism just that they have so much information from us in a small time period! As Jo already said the issue is to not stimulate the immune system.

I used to take supplements prior to scleroderma and when I was initially diagnosed, prior to scleroderma I didn't find they made any difference but once I had scleroderma I could not take them because of side effects?! I am back up to about 30 tablets a day again and think that's enough to swallow literally! I have them in little cases and my dearest hubby bought my a cute little bunny bag to put them in complete with handle to carry it around!

Crying, yeah you're going to do if you get a diagnosis of anything, do you really think you won't? That's unrealistic and putting yourself under unnecessary pressure although I understand the concern about crying in front of your boss. When at work, now some 5 years ago, I was a boss and never thought badly of emotional staff provided there was legitimate reason and there sure is for you!

Fatigue is part of scleroderma but also part of the having children thing as well! There's no cure for either!

Take care.
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#33 Joelf

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Posted 28 June 2012 - 11:38 AM

Hi Cornishgirl,

I'm so sorry you're having a bad day; as Amanda has said, we all take refuge in tears. I remember in the early days before I was diagnosed (and before I joined these forums; I was still awaiting my consultants' appointments at that point) and I went to the doctor because my cough was quite bad, my joints were excruciating and I had convinced myself that I had Idiopathic Pulmonary Fibrosis, having been foolish enough to google it. :rolleyes: I burst into tears in her surgery, which I can tell you is most unlike me (Pollyanna, the cockeyed optimist describes me normally! ;) ) We're all only human (and I don't have two small children, one of whom has chicken pox!!) :emoticons-i-care:

Things will improve for you; the beginning of your Scleroderma journey is always the worse time, whilst you're unsure of how bad things could be and are awaiting a diagnosis. Strangely enough, I was almost jubilant (although that's probably the wrong word really) once my consultant told me it was Scleroderma and to do with my immune system. I was so relieved I started babbling incoherently about immune problems in cocker spaniels and how it can affect the breed (I'm sure the poor man thought "We've got a right one here!" :rolleyes: and has considered me a bit touched ever since!! ;) :lol: )

I hope that you'll feel better tomorrow and that the children allow you to get a little more sleep tonight!

Best wishes,

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#34 Amanda Thorpe

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Posted 28 June 2012 - 02:29 PM

Hey, I forgot to plug myself, Cornishgirl, have a look at my video about emotional adjustment. We all have to make it, the adjustment that is.

Take care and keep posting.


Jo, I can just see you babbling about immune problems in dogs! You are very unique for sure and you are also very dear to me. You work so hard to keep the forums running smoothly, Chats and news articles, I have no idea how you do it all but I am very glad you do.

Take care.
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#35 Joelf

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Posted 29 June 2012 - 12:13 AM

Thanks so much, Amanda; you'll make me blush!! :blush:

As I've said before, the very best thing about having Scleroderma is getting to know all the really lovely people like yourself and Michael and my other friends at ISN whom I would never have met if I hadn't contracted this weird disease. It's very true that good things can often come out of bad things!

Much love to you all,

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#36 chockers

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Posted 30 June 2012 - 04:08 AM

Just to say that I have scleroderma quite mild with Rheumatoid Arthritis. Well firstly, I no longer worry about it as there's not a lot I can do about it. Have been diagnosed 5 years now and I have got a rheumatologist who has seen a lot of Scleorderma who used to work at the Royal Free.

I have been tested for stacks of things. I have strange skin and rosea ( face all blotchy). Been tested for CREST and really all of this time I don't have a firm diagnosis.

Basically I have a mixture of auto immune things. I don't work anymore as the stress would bring something out worse then it already is; plus I am weaker and slower. So that is a big help as life is more relaxed; and the rest of me, well you can see the changes in 5 years. I know I have had it longer then that.

It's slow, I am alive, still enjoying myself, so I no longer worry. Just take the pills and go.

Christine

#37 chockers

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Posted 30 June 2012 - 04:16 AM

Clothes and keeping warm. Well, forget fashion. Some clothes make me feel cold. I wear 3 layers; normally a cotton vest (nice one purple ) which is long. I have all colours then a granny's jumper which comes up to the neck and down the arms but in nice colours with a fleece on top.

Long johns if it's below zero. Always jeans as I find them the warmest; always long socks (knee length); always in winter short socks and a long pair on top.

And sheepskin boots ( cornish ones ) and sheepskin slippers. Then life is not so bad as that lot keeps the heat in and a hotwater bottle at night, magic gloves and a spare pair in pocket to put on top.

Chris.

#38 chockers

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Posted 30 June 2012 - 05:26 AM

Don't take ginko biloba if you are on Methotrexate. Well if I move about my Raynaud's is not so bad. I did have a load of heat pads but have not worn them for 2 years now; I find moving about is the best answer. Some clothes make you feel cold; its the case of finding what suits.

I take nifedipine for the Raynaud's but on the whole it's bad if I am not moving about .Best way is to get the vacuum cleaner out.

Chris