Hospital referal

[Tmontana]

Hieveryone ! I have very bad reynauds and digital ulcers alongside stomach and bowel issues so have been referred to salford hospital in Manchester to investigate suspected schleroderma.. would just like to know if anyone has been referred there and what there experience was at this hospital ..

[Lupiknits]

I can’t help but there are a couple .of people who I think go to Salford. Best wishes

[Trustvolunteer]

I'm currently at Wythenshawe hospital but had nailfold capillary test at Salford My symptoms identical to yours. Also had AMA antibodies detected. A lovely woman did the test and told me there and then I had scleroderma. Up until then I was always "suspected scleroderma. I asked to referred to Salford as they have specialist scleroderma team who supposed to be really good. Have seen a general gastro person from there who referring me on to her colleague who specialises in scleroderma. Still waiting so am guessing list is very long. I'm hoping I've done the right thing asking to be referred there.

[positivedaybyday]

Hi,I have been under Salford Royal since 2017. Personally for me I can't fault them. They moved mountains to get me the best possible care & treatment.

I was diagnosed with acute Cutaneous Systemic Sclerosis (Scleroderma)

Mine was aggressive & progressed so quickly. It was at an early stage when diagnosed even with it's fast progression & none of my main organs had been effected.

If you do have this disease it is individual in how it rears its ugly head.

My advice would be for you to make a list of any questions you have. Raise any problems, even the smallest ones.

Take a friend/partner or family member with you & ask them to jot down the Consultants answers. This helps tremendously & ensures you don't miss any vital information.

I was initially under Prof Herrick who has since retired. She was for me brilliant & honest so I knew where I stood with my case.

I'm under Dr Sami now. I call her this for short as her surname is very long. She is lovely & very caring.

I have secondary Raynaulds which came on six months after my Scleroderma diagnosis. The two seem to happen in most cases

There are a few hospital car parks in case you're not familiar. I use the Stott Lane entrance where you can use cash or a card. £2 generally gives you three hours I think. As with most hospitals the car parking can be busy. It dependents on the time or day.

To be fair I think I've only struggled to find a space occasionally

One thing I would say is don't expect miracles. It's dependent on your individual case & if you do have Scleroderma has it been caught early or has it already started to damage your body.

Be prepared to work with the team for the best possible outcome. Be open for any treatment or research help.

And most IMPORTANTLY try to remain positive. This is your powerful weapon to fight this disease!

I hope you're appointment is very soon & I look forward to hearing all about it. Xxx

[Tmontana in reply to positivedaybyday]

Thankyou so much for replying ... its a worrying time and am anxious about the results but feel a little more confident after your reply ! I have an appointment on the 23rd September .. would just like some kind of answers so I know what I'm dealing with .. thanks so much again and will post after my visit

[Bkart]

Hi Tmontana,

Not a lot I can add to the other reply’s other than to say depending on the time of day I very often find a queue just waiting to go into the car park and then finding a space is not always easy. So I would recommend going extra early to possibly account for this. There are several ok hospital cafe/food outlets so you can always wait in these before your appointment, depending on your situation you used to be able to advance book a porter to help or guide you to your specialist department, so worth checking into this if needed. Good luck with your appointment.