Hi, is there anyone living in the north west near ormskirk or surrounding areas

[lizzy]

[HelenL]

Hi! I live in Liverpool, by junction 5 of the M62.I have had Scleroderma and Raynauds for nearly eight years.What about you?

[lizzy in reply to HelenL]

i live just outside ormskirk,, i have both R&S also diagnosed 9n 2007

[living-the-dream-ssc-ray]

Hi Lizzy and Helen !

im in sunny southport and have lived with the systemic sclerosis and raynauds dream for 15years ! wehoo !

Ive actually been to the Royal Free hospital in London today, seeing the scleroderma team about insoles for my Ugg boots as I havent been able to wear shoes for a few years as my feet are too painful as well as cold ! Ive only had the insoles in for a few hours and I can notice a difference already ! I am also under the care of Dr Sykes at Southport - I feel very lucky that I have a great medical team supprting me through this ! How about you ? who is your medical consultant ?

[lizzy in reply to living-the-dream-ssc-ray]

i am also under doctor sykes,, i must admit i do feel quite lucky as it does affect my internal organs and hasn't altered my appearance as yet,, calcium and stiffness are my biggest problems,, and this awful itch huhh, not sleeping much at the mo either, i do get a little heartburn aand reflux but the omerprazole keep them under control

[lizzy in reply to lizzy]

it should have read it does not affect my internal organs,,,

[HelenL in reply to living-the-dream-ssc-ray]

I used to be under Dr Bucknall at the Liverpool Royal then Dr Mewar but I now attend Aintree under Dr Anderson. Al doctors have been very attentive.

Helen x

[cookie74]

hi,, im in preston, i have had sec/raynauds for 18 year and systemic scleroderrma crest for 15 year, im now 37. x

[lizzy]

your are so young still and having this dreadful disease, i am 47 , i feel like 97 most of the time though

[living-the-dream-ssc-ray]

Ah Dr Sykes is great isnt she ?! I am also lucky that I have no major involvement with the internal organs !

Wow Cookie - Im on my 15th year having been diagnosed at 24, and I will be 39 in 2 months, having been born in 1973 !

wehoo living the scleroderma dream

[lizzy in reply to living-the-dream-ssc-ray]

i havn't been with her very long i was with dr grennan in wrightington, but he seemed to just want me to be really ill, and didn't listen to what i was saying infact it got that way i was in and out that quick he didn't give me chance to speak only answer his questions,, oh my i will be 48 in june, i was diagnosed in 2005

[HelenL in reply to living-the-dream-ssc-ray]

I'm another 1973 baby!

x

[pips]

Hi Lizzy,

I'm on the Wirral. Had raynauds for around a year, possibly have sjorgrens and have positive ANA.

[lizzy in reply to pips]

i have raynauds & scleroderma,, i have a friend with sjogrens,, i have never met anyone else with scleroderma, but i am in support groups on face book,,

[pips in reply to lizzy]

If you don't mind me asking Lizzy, how long did you have raynauds before scleroderma? And do you know if a rheumatologist can diagnose scleroderma or would it have to be a sclero specialist? I would be interested in joining the Fb groups.

[lizzy]

i was actually diagnosed with both raynauds & scleroderma at the same time, but i actually had calcium deposits for many years before i was diagnosed and no signs of ranauds,, m rhumatolagist diagnosed me i have never seen a sclero specialist

[pips in reply to lizzy]

Ok thanks. Was just wondering as have read on some forums folk saying to find a sclero specialist but I think that's mainly in the USA.

[lizzy]

we do have sclero specialists over here, but it's normally down to a rhummy

[living-the-dream-ssc-ray]

Hi everone ! Prof Denton at the Royal Free hospital in London is recognised as an international expert on scleroderma in all its forms ! he is an amazing man ! - I hope this helps

[lizzy]

i know also aintree have a sclero specialist there

[Jessie122]

Hello, I live in Village just outside of Preston, I must of had Raynauds for years without knowing what it was. We have a lady GP and she diagnosed Raynauds. So far the medication Nifedipine did not help. I stuck with it for months but had to give it up because of the awful side effects. I have also been given Duloxetine for Peripheral Neuropathy. I thought the Duloxetine was not helping so gradually came of it to find I was worse without it. I feel perhaps I should see a specialist as things are geting worse.Has anyone tried the Raynauds Unit at Hope Hospital Salford? I was going to ask my GP to refer me to a specialist.

Jessie122

[Jeanette_Ish]

Dr Sykes in Southport was the first person to diagnose me when I lived in Southport she is brilliant, I was diagnosed with Livedo Reticularis in my early 30's & she hoped it would not progress any further, to which sadly it has now.

She was aware I was the youngest person she was treating at the time and when I was in a flare up, I was shown to her students so they had first hand experience, of an attack.

Since moving to Derbyshire my consultant now does not have the same compassion because I looked so good when we first met for my age but have deteriated since then, in fact I have asked for second opinion at Hope hospital as I was given a recommendation from the Ray nards & scleroderma Ass as my consultant did not believe I have ray nards suspected scleroderma or lupus which is in both sides of my family,

I'm in touch with a relative who lives in PA in the USA, she is on the same medication & has a better understanding of her illness than I have & I have been fortunate to have many chats with her, she was 49 when she had to be media to her main hospital with serious chest heart complications caused by the side effects of Lupus, up until that point she had suffered years of medical problems that had been put down to many health problems but on that occasion it was the first time lupus has shown itself at 54 she is now suffering consistent infections has become immune to antibiotics her health is declining and she is worried that like the rest of our family members who were suffering from lupus they died in their mid 50's she feels time is running out & is passing on her knowledge to other family members.

Oh to have her medical providers, her Consultant, Dentist, Nurse, GP & other health providers all communicate their findings to each other & all know her personally as a patient so any problems are sorted before they get out of hand. Every time I visit my GP I have to explain my health in detail to every new GP I see, if my regular GP is unavailable, which I hate as they never listen to my history I tell them & then they start do you smoke? Do you exercise? Do you eat healthy? my response is did you not hear what I said, I cannot walk far because of joints ligaments cause me pain, dry hard skin, pulled tight across body, weight is because I was put on high dose steroids, suffer reflux and bowel & tummy problems then they go on to tell me I’m depressed, I'm depressed because of the pain problems I experience on a daily basis. I have been told it’s all in my head and snap out of it, one doctor even said if I don't know whets wrong with you how can I treat you. All the while I suffer, as I’m sure you all do too.

[tinaparkii]

Only just joined this site. I live in Manchester