Well I got very tired of waiting for my Consultant to arrange the lymh node biopsy.....I had beEn in severe pain for weeks and was finding it difficult  to work. I decided to look for another Consultant with experience in Sarcoidosis. I settled for the Royal Free and asked to be seen by Dr Huw Beynon and am I glad that I did. I had a consultation, lymph node biopsies and results in less than 3 weeks. Amazing......there is no lymphoma thankfully..........it is a sarcoid flare and I am on 40mg Prednisolone daily. It is just 3 days since starting the medication and I am beginning to feel a decline in the pain and my energy levels are improving. I am so very grateful for the excellent care that I have received and so glad that I decided to make decisions for myself as to who to seek help from. I can now look forward to improving...........THANK YOU

I have been very unwell for several weeks now. I have had heart MRI ,CT scans, xrays, blood tests etc,etc . The lymph nodes in my neck are swollen, I have very severe pain in my neck and head and none of the medication has enabled me to be free from pain. I am familiar with these symptoms as I had them for several weeks before I was diagnosed with neurosarcoidosis in 2007. These symptoms preceeded the acute stage when I became unable to walk and also had a facial palsy. I am extremely worried that this will happen again but the consultants will not give me steroids until they have biopsied the largest lymph node in my neck. It has been 6 weeks since this was decided and I am still waiting. They say that there is a possibility that I also have lymphoma and this is the reason for removing the node. I am frightened as surely if this is a possibility then it should have been done sooner. I saw the consultant again last week and he said that I would hear from him within 48 hours.............I am still waiting, in continual pain and worried..........

On the positive side I am now able to work full time and have gradually learned how to cope with the many symptoms

Neurosarcoidosis is a very difficult disease to live with and every day brings a new challenge. I hope to share my experiences and those of others who are living with this disease.