cornishgirl

New member banging head against wall!

38 posts in this topic

Jo - thats it why I am sticking to this site. I'm not doing myself any good googling all the possible ramifications so have stopped that!

Judy T - In terms of telangiectasia - I know they really aren't worth getting worked up about, but when new ones seem to be appearing every week I just wonder when they will stop! I think I will definitely get some of the larger ones on my face lasered, once I get the go-ahead from the specialist.

 

As an aside I have a question concerning sores. For the last year or so I have been getting sores on my scalp (big red raised pimples) that are quite...well, sore! Does anyone else experience this? Not sure if it is connected.

Also I'm pretty sure my hormone levels have gone awry due to very painful periods, changes in menstrual bleeding patterns and excess hair where where a lady doesn't really want it...if you get my drift. My Doctor is reluctant to test hormone levels as I'm only 29 but something is definitely up. Anyone else had hormone issues related to autoimmune connective tissue diseases?

 

Right must go and take 5 yr old to school and start on the pile of washing created by my 'reluctant to be potty trained' 2 yr old.

 

Ooops not Jo - it was Amanda I was replying too. Too early!

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Hi Cornishgirl,

 

Hormones and chromosomes have been found to contribute to the development of autoimmune diseases. This may explain why women are more susceptible to autoimmune diseases than men. I've included our link to Hormones and Chromosomes in Scleroderma to give you some more information which I hope you'll find interesting and helpful.

 

Regarding the sores on your scalp, thankfully, I've not experienced them myself, but have included a link for you on Scleroderma Skin Involvement . I would suggest that they might be connected to the Telangiectasia that you're experiencing (however, that's just my opinion; I have no actual medical knowledge apart from a now out of date first aid certificate! ;))

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

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International Scleroderma Network (ISN)

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Hi Cornishgirl,

I used to get pimples on my fingers. They were red raised lumps but instead of having pus like a zit they had a milky fluid in the top. They were quite sore and annoying and I couldn't figure out what they were until I was told about Calcinosis and then I decided they could be to do with that. The milky fluid looked like it could be a calcium suspension. Anyway after a year or two they went away and I have never seen them since.

 

My Calcinosis consisted of about 3 granules of hard lumps on my elbow once. That was the sum total of my experience there, but it is counted as a definite result for the C in CREST.

 

This disease is certainly a puzzle sometimes and the fact that everybody's experience is so different makes it even more so.

 

Best wishes from a little bit of Cornwall on this side of the globe.

 

JudyT

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Hi all,

 

My appointment with Sclero expert is on Monday and I rang the hospital in Bristol today to confirm. I asked how long the appointment would be and she said 'up to half an hour'. WHAT, I am driving over 2 hours to get there (for 9am) and I'm pretty sure I'd still be explaining all my symptoms to the doctor at 30 minutes. Now wondering whether to bother and feeling a bit deflated. Maybe I should take my bike lock and chain myself to his desk.

 

Also, just wondering if there are any pertinent questions I should be asking him. I definitely want to ask him about the possibility/safety of laser therapy on my face for the telangiectasia's but apart from that I'm not sure. I don't want to appear to be telling him how to do his job but I really want a nailfold capilliaroscopy done - or should this be conducted as a matter of course anyway?

 

Finally, for the last few days, as well as tingling and numbness in my hands I've also been experiencing it on the right half of my head (almost constantly). It feels very strange! Has anyone had this kind of sensation in their head? I'm sure my husband and mother think I make up a new symptom every day. One day its the cold that is really bothering me, another day it might be my joints playing up and today for example its the tingling/numbness. It is really difficult to explain to them how I feel though and how things keep changing. How do other people go about explaining Sclero or any Connective Tissue Disease, to family and friends?

 

I'll let you all know how I go on Monday.

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Hi Cornishgirl,

 

When you asked the nurse about the appointment time all she would have to go on is the average length of time that they allow for each patient. My general practitioner for instance, allows 15 minutes - I don't think I have EVER spent only 15 minutes talking to her. Crikey, we wouldn't even get through what has been happening since last time I saw her, in that time. As for hospital visits, recently when I went for a clinic appointment the doctor was running at least an hour late, because some people need longer and by that time in the day he had got well behind.

 

Just as well your apointment is 9am because at that time you must be at least first or perhaps second on the list so he shouldn't be too far behind by then. As far as knowing what to ask for, my experience is that they have a set routine of what needs to be checked out and then after that the things you would like to have done might need to be asked for. The nailfold changes can often be seen just with a magnifier for instance so it might not be necessary to have a more sophisticated test.

 

Take a list of your questions and remember to ask to be included in the list of those who get a copy of his report after the appointment. I would be very surprised if he doesn't ask for a whole raft of bloods to be done so ask to receive those results too.

 

Best of luck

JudyT

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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.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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(Retired) ISN Sclero Forums Assistant Manager

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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,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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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!

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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

JudyT

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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!]

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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,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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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?

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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!


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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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

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