SarcoidosisUK know that sarcoidosis patients often feel very isolated with their condition. Neurosarcoidosis (NS) is even rarer and, with little specialist support available, NS can leave patients feeling completely lost and confused.
The new SarcoidosisUK Neurosarcoidosis Facebook Group aims is to connect NS patients (and those with suspected NS) from across the UK to help support and educate each other. In addition, the group will host a discussion about other ways of meeting, particularly to include those who do not use the internet and / or Facebook.
If you have diagnosed or suspected NS, or you help to support someone who does, join the group by clicking the button below.
Hi, I (probably) have neurosarcoidosis but I don’t ‘do’ Facebook. I like the idea of an online support group though.
Hi Steve. Thanks for your message. That is understandable that you don’t have Facebook – one of the aims of the group will be to discuss how to involve people like yourself who would rather communicate offline, or at least off-Facebook! Perhaps you could join through a friend or family members account to stay up to date with discussion? Failing that, please just make sure you are subscribed to the SarcoidosisUK Newsletter and check our website/blog for any announcements in the future. Please do contact us directly if you would like to find out how else we can help support you right now. Best wishes, Jack, SarcoidosisUK
Hi Steve,
I have NS and organise our local group meetings in Scotland.
There are other sarcoid groups around the country. If you take a look at our support group map and find one you could attend you can sign up online.
Our new NS Facebook group have a member interested in starting a support meeting especially for neurosarc, in the Midlands. I’ll keep you in mind if you’d like attend and this comes into being.
I had a triple heart by pass in 1994 whilst under the knife it was found I had some lymph nodes around the lungs which where subsequently diagnosed as Sarcordosis.After 18 months of tests it was confirmed I was all clear.
Now in 2018 I feel I may have a resurgence of the condition.Why?
Something!! Has attacked my muscles I have gone from an active 71 year old playing badminton ,squash,swimming,aqua fit walking the dog, going to the gym TO a mobility scooter unable to do any of the aforementioned and now have 5of the classic signs of sarcoidosis.1.Shortness of breath2.kidney stones3 Tiredess and fatigue 4Stuffy nose 5 Muscle pain .What is the quickest test to confirm?i am seeing a neurologist for the total muscle breakdown but feel a test to rule out or confirm sarcoidosis is needed
Hi David, Thanks for your comment. It is good that you have an appointment with a neurologist. I would recommend you schedule a call with the SarcoidosisUK Nurse Helpline – find more details here: https://www.sarcoidosisuk.org/support/nurse-helpline/. Best wishes, Jack, SarcoidosisUK
Just wanted to share some feedback to all those that have Sarcoid. I’ve spend the past 4 years being treated for Pulmonary Sarcoid, I’ve now been diagnosed with neuro Sarcoid and still waiting for treatment since March!!
I have a relative in California who informed me they use inra-red saunas as part of sarciod treatment. Although there are spa clubs that have Infa-red saunas on site, I purchased an infra sauna cabin for home use. Its drastically cut down the amount of pain killers I have been taking. Each time my body / joints etc hurt I sit in the sauna for 45 minutes at 60c and my aches and pains go away. Research in the USA / Germany apparently show Infa-Red Saunas can boost the Immune system.
Maybe worth a try?
Hi, My brother is having neuro sarcoidosis, it was diagnosed in 2014. Doctor informed us that hsi body was responding corticosteriod. After that he continues to take this drug for last 5 years but still there is no cure. When he stopped taking this drug his health or organ start showing signs of sarcoidosis for e.g red and blurred vision, pain in points, weight loss, chest etc.
His SACE value is 108*U/L
Can you please suggest better medicine or treatment for neuro sarcoidosis?
Thank you!
Hi, I would recommend you join the SarcoidosisUK Neurosarcoidosis Facebook Group – link in blog post above – and ask the members there, may of whom have sarcoidosis and lots of experience with different treatments. If you do not want to use Facebook or this does not provide an answer then please get in touch with me to schedule a call with the SarcoidosisUK Nurse Helpline. You can click here to contact us. I hope this helps, all the best to you and your brother, Jack, SarcoidosisUK