Sarcoidosis specialist in Scotland

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

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

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.