I need a Consultant reccomendation

[Moirawest]

East Midlands - Lincolnshire

My GP does not seem to understand that I need to see a Rheumatologist despite being prescribed Adinpine for some years.

Getting worse any information appreciated

[LittleMissH]

Hi there,

I'm really sorry to hear that things are getting worse for you. I take Adalat (amongst other things) which I think is similar to Adinpine.

Have you got a diagnosis? I'm assuming (due to the adinpine) that you have raynauds. Has the GP Done any blood tests to see whether it is primary or secondary raynauds? If it is primary, then you might not need to see a rheumatologist, although it's important that they rule out the possibility of this being secondary to something more serious.

Do you have any other symptoms?

x

[Hidden]

Seek a Second opinion!!

[tall-tim]

Hello Moirawest.

You haven''t explained much of your condition here. If you can give us more detail we can be helpful with advice. For instance what is Adinpine for? I haven't heard of it.

Tim

[zenabb]

You have a right to a rheumatologist. Insist. but in general things happen to us in cycles. Symptoms come and go.

[Moirawest]

Thank you but what I need (see title) is a suitable consultant preferably in the East Midlands. If I have a name I can research them and ask the GP specifically for that person. Knowledge is power.

My father had Raynaud's which caused heat valve leakage in his early 20's. He also lost his leg in an accident as a child, so this is blurring things. Add in that I have a progressive form of MS.

I have not had a specific blood test either. My Raynaud's is getting worse and I am keen for my corpse toes to be examined. My fingers can become flat easily and my fingers are often painful. Some toes get itchy and painful, so I think I should get a better more informed view.

Pointers please

Thanks

Moira

[SallyRW]

Hello Moira, very sorry to hear of your frustrations. I can understand your concern and worries.

This is a tad long winded, sorry, trying to be succinct, not very successfully!

I started with left leg neurological issues in Aug 2015, (including issues with three toes, which went "flat"), which ultimately was attributed to thymoma (cancer of thymus), this was removed July 2016 (surgeon at Royal Brompton London NHS), after which my neurological symptoms improved dramatically straight away.

None of this would have been found had I not insisted on private referrals to two neurologists (first one useless so I insisted on second opinion) & I paid for MRI scans of spine and brain. My GP would not refer me on NHS, just wanted to give me medication without diagnosis or knowing the root cause. Private was my only option.

Before the surgery (thymectomy) I had strange Raynauds symptoms in my hands, tho only when I sat on the loo!! Bizarre I know, these symptoms disappeared after thymectomy. I had three blood tests over several months, all borderline or positive for systemic sclerosis/scleroderma/CREST.

I've had chronic constipation since June 2016, suddenly one day my bowel stopped working completely, I was concerned this may be connected to systemic sclerosis/scleroderma. At my insistence I saw a rheumatologist in Sept 2016 (NHS), who said I did not have systemic sclerosis, and attributed my symptoms to thymoma.

Not happy with this, so again I had to insist on private rheumatologist, who diagnosed scleroderma & referred me to a specialist rheumatologist for scleroderma, who diagnosed Limited Scleroderma and has referred me to a Professor in London.

In parallel I've seen a gastroenterologist on the NHS for my constipation, and private gastroenterologist for 2nd opinion, & private MRI proctogram. I pay for colon irrigation every week/ten days since January. NHS just want to prescribe laxatives and horrid meds which after a while stop working, are horrendous, some make my Raynauds much worse.

The NHS gastroenterologist has prescribed Peristeen (home irrigation system), and says stoma may be my only option tho Limited Scleroderma may compromise success as healing (perhaps) may not be good due to this condition. The private gastroenterologist is more proactive and pursuing other options.

I'm sorry to have written a small novel. I'm trying to say insist on referrals, second opinions, don't be fobbed off with medication, we should be finding the cause, not just treating symptoms without a diagnosis or prognosis. Had I not insisted and paid, my cancer would not have been found, nor would my Limited Scleroderma .

All the very best and good luck.

[PaleIndian2]

I know I am not from the Midlands so can't help you with a name but something similar happened to me. My GP knew I had Raynauds but did nothing about it for many, many years until one day I asked to be referred to a specialist. He was a general rheumatologist who was okay and diagnosed LSS and monitored me for lung involvement but when I asked for more joint care, instead of saying that my local hospital didn't do that, he referred me to a Scleroderma specialist who I travel to. At the moment I travel to the Royal Hallamshire in Sheffield for my PH and Aintree hospital in Liverpool for my Scleroderma. It may be that you have to travel further than your local hospital for proper treatment.