How to get diagnosed

[Dougie]

Hi everyone, I'm new to this forum. I would appreciate any advice on getting investigated/diagnosed. Have been suffering fatigue for past 10 years. Also have other symptoms like muscle weakness/tightness around middle and chest area when I do any type of exercise or physical activity, difficulty breathing when lying down (worse if I have overdone things). I also have skin rashes on lower arms which seem to flair up in sunlight and different type of rash on leg and foot. I have been to numerous doctors over the years and still not getting to the bottom of my symptoms. I am hypothyroid and on thyroxine 125 and recently T3 added which has helped but still have the fatigue and muscle symptoms. Would anyone be able to recommend a good consultant I could see privately anywhere in UK? I am in Northern Ireland, but willing to travel. Thanks.

[Hidden]

Hi Dougie,

Sorry you have been suffering, Joanne Goode might be able to point you in the right direction for a good Myositis specialist.

I’m sure she will reply to you when she spots your post .

[Dougie in reply to Hidden]

Thanks Helen-M.

[MissFG]

Hi Dougie I have Hashimotos and am on T3 but also diagnosed recently with an MRI for myositis although a blood test showed I had the anti body 18 months ago. I had muscle and nerve tests which were clear as they put the needle in the wrong muscle in my thigh that wasn’t at the time affected.

So it’s taken a year to get diagnosed. Although I am being treated I want answers! And the best person is Dr Chinoy at Salford Hospital Manchester as he is a specialist in this area and a rheumatologist. I got my GP to refer me after my diagnosis in September and I have my appointment with Dr Chinoy in December. So not too long a wait. However if you can afford to he has a private practice. It’s about £250 for your first appt £180 thereafter I think. Plus it’s near Manchester airport in Cheshire. So either option would be good for you if you are willing to travel.

If possible why not ask your GP to refer you to your local Rheumatology if you haven’t already done so? Or ask for the specific tests for myositis such as the antibodies? Although an MRI is the conclusive test and it took me a long time to get one! It really shouldn’t be a battle but trust your body and your instincts and start insisting! X

[Dougie]

Thanks for this information Miss FG, it is very helpful.

[Wighton]

Hello Dougie, sorry to read about your difficulties. It’s almost impossible to identify certain problems and from that try to reach a diagnosis with Myositis - it just seems to vary so much I live in Glasgow and attend Queen Elizabeth hospital, Dr Farrugia is the specialist but she doesn’t consult privately. It may be she or one of her colleagues could advise a consultant more local to you. There will be someone in NI but it’s going to be finding them. Best of luck

[Wighton]

Hello again Dougie, I found this link for Northern Ireland, someone here may be able to help. disabilityaction.org/news/i...

[Jo-Goode Administrator]

Hi Dougie,

The closest doctor I can suggest is Professor David Kane in Dublin. Not a Myositis specialist but a former patient I know had very good treatment with him and he has a good understanding of Myositis.

tallaghthospital.ie/Consult...

beaconhospital.ie/consultan...

There is a list of specialist clinics on the pinned post, but a couple to suggest would be Dr Patrick Gordon at Kings College kingsprivate.com/consultant...

Or Dr Hector Chinoy in Manchester hectorchinoy.co.uk/index.php

[Dougie]

Thanks so much Jo and everyone for your helpful advice. Sorry for the delay in replying, I was away for a few days. I am going to seek a private appointment with Dr Chinoy in Manchester. I will let you know how I get on. Very best wishes.