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Tuesday, 19 January 2016

Neurosarcoidosis and what you NEED to know!!

Ok, a very good friend and sarcoidosis brother passed this information on to me and I think it's vital that if you are worried and concerned that you or someone you love does have neurological issues in terms of sarcoidosis then you MUST, absolutely MUST read the following information which is  provided here on the  NHS Royal Free Hospital website ... If, like me, you suspect you might have neurosarcoidosis and have attended your local hospital for an MRI scan, WITHOUT CONTRAST and you've been told you're all clear, then you MUST read this information ... You absolutely MUST have the MRI WITH CONTRAST .... It's a battle, I'm symptomatic of neurosarc, however I'm still in limbo in terms of getting the correct MRI .... Please do NOT let this happen to you ... My consultant specifically requested my MRI be carried out WITH contrast and they failed to do so ... Therefore my symptoms continue, my condition shows no signs of improvement and I'm still left hanging .... Please read the information and either show it to your doctor or present it to your consultant at the hospital .. It is absolutely VITAL for those with sarcoidosis who are displaying symptoms of neurosarc and have no firm diagnosis ... If you are given a CT scan for neurosarc and given the all clear, it's inconclusive ... CT scanning isn't sensitive enough to detect neurosarc, therefore the diagnosis is incorrect ..... All information is on the website...... Take care of YOU!





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