And the waiting continues..

Posted by tcogb

28 Feb 2013

Saw my favourite GP today. You know why she is my favourite? She actually turns away from her PC, moves closer to you and listens to what you want to say & asks you questions. Other GPs at the practice have a horrible habit of continually looking at their computer screen and click away as you try to talk to them with little eye contact. Even if the appointment outcome is the same, I don't know about you but I feel so much better if I feel I have been listened to and not just felt like an inconvenience to be hurried out of the surgery.

She has prescribed me a 10mg twice daily dose of the slow release version of Nifedipine to see if that helps more with my Raynaud's rather than the 5mg 3x daily immediate release version I had and which hasn't helped - they have to order it in so hopefully I can pick it up tomorrow (I live in the sticks and go to a country practice that has their own pharmacy on site) & she's going to chase up the Royal Free to find out when I am likely to get an appointment through and get back to me.

She wasn't keen to prescribe any antibiotics for the blister site on my leg so I'll just have to keep a close eye on it and make sure the red inflamed area doesn't get any larger. I'm thinking of drawing a circle around it so I can be sure and I do take photos on my phone so I can see how it is progressing as it's so easy to lose track of whether it's really healing or not!

I've decided to write the occasional blog post so I can document how the diagnostic process goes. My GP does think I have some form of Scleroderma but we'll just have to wait and see and I'm trying not to worry abou the wider implications until I know for sure what's going on.

Thanks for the comments on my other Blog post - the path to diagnosis is a bumpy ride and can be pretty scary so it's good to know there are others out there who understand. I avoid talking to anyone else about this as it just comes out as if you are wallowing in self pity about just having cold hands! And I certainly wouldn't want to bore them with all the other symptoms as I think their eyes would glaze over with incomprehension!

6 comments

overnighthearingloss

28 Feb 2013

Its a good idea to take photos and compare them.
Thats what I did with my last ulcer. I managed to get that to heal by regular finger baths with the addition of ginger powder.
Obviously yours is in a different place but the same thing of keeping it clean will apply.

The other thing I did was keep the area warm to encourage blood supply.

Maybe I was lucky or maybe I hit on some essential ingredients to healing.

Try to ensure you keep at least one room heated to YOUR necessary requirements. Even if that means essentially living in one room.

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thesignwizard

1 Mar 2013

I'm like you my fingers ulcerate & thankfully only one this winter. When you do the finger baths do you add ginger powder to the container and how much? My baby fingers and thumbs are not affected. This is my first time posting to this forum, I found this by searching over the last 2 months.

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tcogb

1 Mar 2013

I really hope someone replies to your question & can help with advice about your finger ulceration. I haven't had ulceration on my fingers just blistering on my leg so can't offer any first-hand advice. It took me a long time to pluck up courage to post on here and I just read other people's questions & blog posts for a while but then I thought it would be useful to write blog posts as a kind of 'diary' for me while I wait for a specific diagnosis which I am sure I will get at my first appointment at The Royal Free hospital. Keep strong.

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tcogb

1 Mar 2013

I drink a LOT of Ginger tea! I haven't yet suffered any ulcers although this latest blister on my leg had me worried. Ginger tea feels warming and I like the taste so hopefully it helps. Yes, I agree that keeping one room especially warm & when you're in the house using that room as your 'refuge' is important. I also add a hot water bottle and heated bean bag to the mix as well as being wrapped up warm & wearing wrist warmers & fingerless gloves even indoors as well. The severe Raynaud's attacks have only really hit me hard over the past few months so it has taken me some time to realise I just can't brazen it out & I DO have to take preventative measures to make sure I don't get the full-on attacks where it takes up to two hours for my hands to get back to normal with all the associated pain and frustration that invovles.

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Irene55

1 Mar 2013

That is true what you say about doctors. Mine used to spend most of his time looking at his computer screen and not looking at me. I was desperate to find out what was wrong. The dry, itchy skin he said was cosmetic and he looked at my legs and said he could see nothing wrong when I told him about all the pain I was having and not being able to walk up stairs or sit down or get in the bath. I was the surgeon who did my carpal tunnel operation who listened and who saw my fat, puffy, painful hands with shiny skin and referred me to a rheumatologist. I got an appointment very fast and got my diagnosis and treatment.

The first time I saw my GP after that to get a sick note for work he was too embarrassed to look me in the eye. He gave me the note quick to get me out of the surgery.

I don't blame him completely, because Scleroderma is hard to diagnose and I did not have the signs on my face. Also, the NHS has told doctors that they are not to order tests unless it is absolutely necessary.

I saw Professor Denton at the Royal Free Hospital and he is the best.

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