Type of scleroderma?: Doctors not much... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Type of scleroderma?


Doctors not much help..

Hi All :)

Fab to find a group who know what they are talking about! :) l need your opinions and your guidence :)

I went to 5 different GP's and got 5 different answers for the patches on my skin. Finally l said to the last one, l think it's some kind of morphea or schleroderma to which she replied it's definatley not. To defend my case and try and get somewhere, ltold her l had had so many diagnosis which didn't fit so l wanted to see a consultant. She reluctantly agreed to get me one after saying "you really think you are ill don't you"... so she got me an appointment at a hospital.

I saw a dermatologist consultant at the hospital who was nice but confused. He went and got another doctor and they ummmed and arhhed and he finally siad we think it's morphea, limited to your skin. Its not systemic as you dont have ulcers on your fingers. I said l have raynauds.. but he repeated l don't think it is systemic you would have a lot more symptoms. However he didn't ask about my overall body pain, my leg cramps, blurred vision, dry eye etc.

I then told him l have a dark dented patch between my eyebrows which is making its way down my itchy nose and l can see another patch at the corner of my eye and if l stand in a sideways light- like my bathroom l can see a white line running down my nose where the shadow is appearing. The prickly itchy sensation on my face is the same as the several patches down the sides of my torso... he replied "oh l cant see it, you are just looking for stuff, everybodys face gets older.."

He siad we need a biopsy from my torso, so l had one there and then.

I am still awaiting my results.

I feel frustrated and would love your advice on what to do and how to get proper diagnosis when my dermatologist a.) Isn't too well up on sclero and b.) Thinks lm worried about getting old!

Thanks everyone, l really appreciate any imput :)

12 Replies

How frustrating! On the plus side, biopsies don’t usually pre-judge ;)

Shellybrown in reply to The_Bear

Hehe.. yeah very good point Bear :)

Hi - so sorry your experiencing difficulties. I hope your biopsy provides useful results. If you still don't get anywhere it may be worth getting a private appointment with a Rheumy. It does cost more, but once you've got your diagnosis you "go back" to the NHS but this time they can't ignore it. Hope you get the help you need very quickly. x

Thank you, l was wondering if a dermatologist was the right person..

Def look at that next.. Getting some kind of diagnosis and then going back to NHS is a good plan of action :)

You need a rheumatologist.

Shellybrown in reply to zenabb

How do l dind a really good private one in my area? How did anyone else do it who went private please? :)

Hi, you haven’t said if you’ve had any blood tests done for auto immune conditions? x

Shellybrown in reply to Dawzelle

I had a few private blood tests.. l don't get the result.

"ANA Screen NEGATIVE. If CTD suspected, request ANA "

So negative but if Connective Tissue DisorderSuspected request ANA???

I don't know what that means. Wish l had asked but l have only just realised it said CTD

I have a diagnosis of hypermobility of my joints.

It says my MCH is 33.2 which is flagged as a little too high

And my RF factor came back postive 5.7 IU/ml

I have been on levothyroxine for many years and aparently tested pos years ago for antibodies to my thyroid.

Thank you for your reply Dawzelle :)

Dawzelle in reply to Shellybrown

I have to be honest I’m a bit clueless on blood test results, I’m not medically minded. Reading between the lines of what my GP told me, I have ACA but nothing more has been said or explained about the results. From there I was referred to a rheumatologist and that was when I got my diagnosis. Not much help I’m afraid but maybe worth following up on it. Hope you get it sorted soon. x

Shellybrown in reply to Dawzelle

Thanks hun :)

Hi - going private is usually done through your GP or health insurance if you've got it. Alternatively you can look for local private hospital/clinics in your area and contact them for help. I saw my Rheumatologist through BUPA but I still needed a referral from my GP - but that was a long time ago and things may have changed.

There is also the Scleroderma & Raynaud's UK society who might be able to help:

sruk.co.uk, helpline: 0800 311 2756. office: 020 3893 5998. x

fab answer, thanks hun :)

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