Sarcoidosis specialist in Scotland

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Hi all,

I'm new to this forum having just had an empirical diagnosis of sarcoidosis. In hindsight I have clearly had it for years but had a major flare in the last 6 months, leading to further investigations and diagnosis.

I am now waiting for a referral to a respiritory consultant. Can anyone recommend a sarcoidosis specialist in Scotland? There seems to be a Dr Owen Dempsey in Aberdeen and a Dr John Hunter in Glasgow. Does anyone have experience with them or suggest anyone else?

Thanks

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  • Posted

    Marie, welcome to the forum... your location in Scotland and position to obtain appropriate referrals may become very important. Has your Sarcoidosis been confirmed by biopsy for instance?

    How local are you to a MAJOR hospital with Sarcoidosis consultants available? I would advise you gaining access to a consultant in a large hospital as there will be more support services than a small hospital. My care started outside London and it is largely been the case that expertise has been more readily available for my treatment there than here in Buckinghamshire.

    Kind regards

    David

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    • Posted

      Hi David, thanks for your reply.

      I live in Central Scotland with access to a few major hospitals. Unfortunately though I can only find 2 consultants in Scotland with an interest in sarcoidosis, the one with more apparent experience is in Aberdeen which is 3 hours away. However, I would be prepared to travel there for a specialist consultation.

      My ophthalmologist is 99% sure I have sarcoidosis. I also have signs and symptoms in many other areas. I had chest xrays and scans following an accident 6 months ago and these showed lung abnormalities and enlarged mediastinal lymph nodes consistent with sarcoidosis.

      ACE level is within normal range.

      I know the gold standard for firm diagnosis is a biopsy and I am waiting for a skin biopsy but I am anxious to avoid any more invasive investigations. So the diagnosis for now is 'probable sarcoidosis'. I have started a course of prednisolone at high dose, which has definitely improved my intermediate uveitis, my breathing and my joint and muscle pain.

      I know in some cases consultants will make a firm diagnosis based on clinical signs and symptoms alone and I am hoping for this.

      Mairie

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    • Posted

      Good morning Maire.

      You seem to be about at the same point l was at about 4 months into my journey. I had a CAT scan at your stage followed soon after with a biopsy.

      If l were you, l would have either a CAT or MRI scan, if available, as less intrusive. That would give your consultant the best picture possible without biopsy, however my biopsy was easy peasy and confirmed absolutely that l had sarcoidosis. I would in your case have the biopsy to confirm exactly what your condition is..... and also rule out anything else. That might prove to be very important for you.

      I have developed a dependency for steroid (predisolone) after taking it long term. This may well have contributed to me developing Periphial Neuropathy (numbness or lack of feeling, primarily in my feet and to a lesser extent my hands) and steroid will also mask other conditions. I only discovered I had Ostioartritus on a break from steroid when the pain in my right hip joint became unbearable. I will likely have an operation later this year to deal with this. So my experience is to go carefully with steroid. You may find that you will be asked to try Methotrexate in time if there continues to be active Sarcoidosis in your lungs.

      If you have Sarcoidosis in other areas you should be asking the question of a Neurosarcoid Consultant if you have any abnomily in your spinal fluid. I have a raised level of protein in my spinal fluid which was obtained by lumber puncture and remains largely unexplained other than it may be a sign of infection or anomaly somewhere in the brain or spine

      But as l also have damage to the nerves of my feet l can have a sample taken from my feet to confirm 100% Neurosarcoid. I am being treated as 99% sure of Neurosarcoid as my doctor thinks the brain MRI image is conelusive.

      I find it surprising there is not more interest in Scotland with Sarcoidosis as l would have thought the climate being cooler and more rain/dampness (I have lived in Scotland for 4 years) would have resulted in more cases. That said, ignorence of this terrible condition seems to be prevalent.

      I wish you well in your search for a suitable consultant.

      l can say, if you have Neurosarcoid involvement, at The Royal Free Hospital in London, their website encourages people to be referred there to their specialist unit. You would be able to do this from Scotland and you say you are willing to travel.

      My journey to get there has taken over 3.5 years... but l look forward to my first appointment next week.

      Kind regards

      David

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  • Posted

    God bless you and good luck I am in Texas. But will help if I can!
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  • Posted

    Good luck with the specialist. I live in the UK .

    After your visit with the specialist, find some good nutritional information that can be of great benefit to your condition.

    Good luck,

    Psnm

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    • Posted

      I’m hoping to and I will share. I have learned that anything that causes inflammation will cause a flare with the disease, plain organic pumpkin is very good for our gut health. And I will share anything I find new, take care.
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  • Posted

    HI Marie,

    How are you now?

    I run the sarcoidosis support groups in Scotland https://www.facebook.com/groups/207103726300073

    I'm compiling a very small list of specialists in Scotland who are willing to learn about and treat sarcoid.

    You got 2 of them, both recommended by our members but we don't have actual NS specialists here. 

    I see Dr Kidd at the Royal Free as was suggested previously.

    He's THE man for NS in the UK.

    It is becoming more and more difficult to be referred outside area but the UK government are committed (they declare) to helping sign post rare diseases to the appropriate specialist by 2020.

    There are other doctors here who are "interested" in sarcoid and NS though.

    They seem willing to confer with experts so learn on the way.

    We have/had;

    Dr Oswald Jack (polar reviews about him :-/ ) - MS specialist.

    Dr Martin Perry Rheumatology, Royal Alexandra Paisley

    Dr Christian Neumann, neurology, Forth Valley Royal, Larbert

    Dr Nic Hirani Edinburgh Royal Infirmary,

    Dr Esther Sammler Neuro (MS) Ninewells, Dundee

    Dr Gillian Thomlinson Respiratory, Queen Elizabeth Glasgow

    Dr Katy Murray Neuro, Forth Valley Royal, Larbert

    Dr Y Sayed, Respiratory, Monklands

    If you give me your health authority I may be of more help.

    SarcodiosisUK are the only sarcoid charity in UK and have been raising funds for mTOR research into a cure.

    You can find info here https://www.sarcoidosisuk.org/donate/20th-anniversary-campaign/

    All the Best,

    Jacqui

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